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Return to Work in Survivors of Human Papillomavirus–Associated Oropharyngeal Cancer: An Australian Experience
Journal Pre-proof Return to work in survivors of human papillomavirus-associated oropharyngeal cancer: An Australian experience Claudia Zecena Morales, MD, Lachlan McDowell, MBBS, Karolina Lisy, PhD, Amanda Piper, MHA/MPH, Michael Jefford, MBBS PhD PII:
S0360-3016(19)33751-4
DOI:
https://doi.org/10.1016/j.ijrobp.2019.09.001
Reference:
ROB 25927
To appear in:
International Journal of Radiation Oncology • Biology • Physics
Received Date: 24 May 2019 Revised Date:
6 August 2019
Accepted Date: 4 September 2019
Please cite this article as: Morales CZ, McDowell L, Lisy K, Piper A, Jefford M, Return to work in survivors of human papillomavirus-associated oropharyngeal cancer: An Australian experience, International Journal of Radiation Oncology • Biology • Physics (2019), doi: https://doi.org/10.1016/ j.ijrobp.2019.09.001. This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Elsevier Inc. All rights reserved.
Return to work in survivors of human papillomavirus-associated oropharyngeal cancer: An Australian experience Short title: RTW in Australian HPV-OPC survivors Claudia Zecena Morales1, MD, Lachlan McDowell2, MBBS, Karolina Lisy1, PhD, Amanda Piper3, MHA/MPH, Michael Jefford1, 3, 4, MBBS PhD 1
Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, Melbourne
Victoria, Australia 2
Division of Radiation Oncology, Peter MacCallum Cancer Centre, Melbourne Victoria,
Australia 3
Australian Cancer Survivorship Centre, a Richard Pratt legacy, Melbourne Victoria,
Australia 4
Sir Peter MacCallum Department of Oncology, University of Melbourne, Parkville Victoria,
Australia Corresponding Author Prof Michael Jefford Peter MacCallum Cancer Centre 305 Grattan Street Melbourne Victoria 8000 Australia Email: [email protected] Telephone: +61 3 8559 7902 Corresponding Statistical Author Claudia Zecena Morales Peter MacCallum Cancer Centre 305 Grattan Street
Melbourne Victoria 8000 Australia Email: [email protected] Telephone: +61 3 8559 5000 Conflict of Interest: None Funding: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. Acknowledgements Thank you to Ms Allison Drosdowsky from the Department of Cancer Experiences Research, PMCC, Melbourne, Australia for statistical analysis. Thank you to the Head and Neck Division of Radiation Oncology; Dr Tsien Fua, Dr Leta D’Costa, Dr Andrew Coleman, Dr Albert Tiong and Dr Chen Liu for participant recruitment.
Abstract Introduction Human papillomavirus (HPV)-associated oropharyngeal cancer (OPC) commonly affects people of working age, yet there is limited data regarding the return to work (RTW) experience in this cohort. This study aimed to investigate the proportion of survivors currently working following completion of radiotherapy (RT), and explore potential facilitators and barriers to working after treatment. Methods A cross-sectional, single-institutional study was undertaken at the xxx. Eligible participants were aged 18-65 years at diagnosis; employed at or within the three months prior to diagnosis, and had completed curative treatment for HPV-associated OPC ≥ four months prior to enrollment. Participants completed a paper-based survey to assess baseline demographics, employment status and quality of life (QoL; FACT-HN). Open-ended questions explored factors affecting RTW. Associations between current employment status and various disease, treatment and demographic variables, and with QoL, were examined. Free-text items were analysed by summarizing content analysis. Results Of 93 participants approached, 68 responded (73.1%). Mean age was 54.1 years (range 3964) and 89.7% were male. Most participants (67.6%) had stage II disease and were treated with chemoradiation (85.3%). Mean time post-treatment was 2.6 years (0.3-9.1). 58/68 participants (85.3%) were working at enrollment; median time to RTW was 6.0 months (IQR 4-10 months); 45 (77.6%) in the same role and 35 (60.3%) to the same number of hours. Ten were not working; three had retired; five reported persistent and significant treatment toxicity preventing employment. Survivors currently working reported higher physical, functional and
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global QoL scores. Access to leave and support from treating doctors were facilitators for RTW, whereas fatigue was frequently reported as a barrier to RTW. Conclusion With time, the majority of participants with HPV-associated OPC RTW following radiotherapy. Attention to symptom management and support from the workplace may enable more successful RTW.
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Introduction Head and neck cancer (HNC) is the 7th most common cancer in Australia1 and the 8th most common cancer in males in the United States2. Historically, oropharyngeal cancer (OPC) most commonly affected men over 60 years, of low socioeconomic status and with a history of heavy tobacco and alcohol use3. The rising incidence of human papillomavirus (HPV)associated OPC has resulted in a rapid increase in the number of younger, fitter and employed patients with HNC 3-5. A consequence of this shifting demographic is the higher proportion of HNC survivors expressing a strong desire to return to work (RTW) following treatment. Although employment following cancer treatment provides many benefits to cancer survivors, including a sense of identity, control, a sense of capacity, belonging, and financial security610
, many face difficulties in retaining or returning to employment following treatment11. A
meta-analysis by De Boer et al. reported that cancer survivors are 1.37 times more likely to be unemployed compared to healthy individuals12. Based on 2008-2010 United States data, the total annual per capita lost productivity was US$3593 (diagnosed >1 year ago) and $4694 (diagnosed <1 year ago) in cancer survivors of working age13. In a recent Australian study, unemployment in cancer survivors was estimated to result in a loss of A$1.7 billion (at January 2018, approximately US$1.22 billion or €1.06 billion) in GDP14. Unemployed cancer survivors are more likely to experience financial toxicity in comparison to employed cancer survivors including psychological distress associated with finances15. Compared to other cancer types, HNC survivors may experience higher rates of unemployment 16-19. To date, studies reporting RTW in HNC populations have largely focused on surgical cohorts or have had heterogeneous inclusion criteria, with limited relevance to HPV-associated OPC survivors who are younger and thus likely have a greater need to RTW. Published data on RTW in this group is extremely limited, with only one US-based study identified20. Given the 2
differences between the US and Australian contexts, importantly that Australia has a universal healthcare system and employees are legally entitled to paid sick leave, a study investigating the Australian experience is warranted. The aims of the present study were to understand the RTW experience of patients with HPV-associated OPC treated primarily with radiation, specifically in the Australian context.
Methods and materials Participants Patients undergoing follow up at xxx were identified from an institutional database and recruited between February and April 2018 (Figure 1). All participants provided written informed consent. Eligible participants were: (1) diagnosed with HPV-positive OPC; (2) aged 18-65 years at diagnosis; (3) employed at or within the three months prior to diagnosis; and (4) had completed curative treatment ≥ four months prior to approach. Only definitive oncological procedures (radical oropharyngectomy, neck dissection) were defined as surgical i.e. diagnostic tonsillectomies and excisional nodal biopsies were not considered as surgical cases. Participants were required to complete a paper-based survey and provide informed consent in English. Participants were excluded if they had a history of acute psychiatric illness or were deemed inappropriate by the treating team for other reasons, including placing additional burden on patients experiencing stress. Participants did not receive any form of compensation for study participation. The study was approved by the xxx. Measures Demographics Medical records were accessed to collect demographic and clinical data (age at diagnosis and enrollment, sex, area of residence, tumour site, stage at diagnosis based on the updated American Joint Committee on Cancer Staging Manual, 8th Edition21, and treatment received).
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Participants reported on education, marital status, income level (pre- and post-cancer) and number of dependents. Participant-completed measures Quality of life (QoL) was assessed using the Functional Assessment of Cancer Therapy Head and Neck (FACT-H&N), consisting of the FACT-General (FACT-G) questionnaire (27 items assessing physical (PWB), social (SWB), emotional (EWB), and functional (FWB) wellbeing domains) and a 12-item inventory specific to survivors of HNC 22. Scoring is on a 5point Likert response scale anchored between “Not at All” and “Very Much” (0-4; maximum score is 148). A survey developed by the study team collected employment details before and after treatment (occupation, work hours, whether self-employed, time off work and current working status). Questions further asked about the impact of four factors on RTW (symptoms, workplace, supportive care and financial issues) on a 5-point Likert response scale and included open-ended responses for each factor. Two final open-ended questions invited responses about the most important facilitators or barriers to RTW. Data and statistical analysis Descriptive statistics were used to summarise participant characteristics. Income levels were bracketed pragmatically (average full-time weekly income in Australia in November 2017 was A$1567.90/week)23. Occupations were initially classified based on the International Standard Classification of Occupations24 and further classified into white collar or blue collar occupations based on the European Working Conditions Survey25. Employment outcomes, including current working status and the returning to the same or more hours at work were analysed for associations with selected demographics and clinical variables and patient-reported outcome measures (QoL; FACT-H&N and subscales). 4
Associations between variables were analysed using appropriate statistical tests: categoricalcontinuous variables were analysed using independent t-tests and categorical-categorical variables using Chi-square tests. A p value of < 0.05 was considered statistically significant for all tests. Effect sizes were calculated using Cohen’s guideline26. Statistical analyses were performed using Statistical Package for the Social Sciences (SPSS) version 23.0. Responses to open-ended questions were analysed separately for each question using summarizing content analysis to generate categories of facilitators and barriers to returning to work27. Each category is presented alongside a frequency count of the total number of responses contributing to that category, with some categories illustrated by verbatim participant quotes. Results Of the 93 patients approached to participate in the study, 86 consented and 68 returned the survey (response rate 73.1%) (Figure 1). Baseline characteristics of the sample are summarised in Table 1. The mean age at diagnosis and recruitment was 54.1 years and 57.0 years, respectively. The majority of participants were male (89.7%), living in a metropolitan area (77.9%) and were tertiary educated (60.2%). The majority of participants were treated with primary chemoradiation (85.3%). Of the five participants who received a definitive surgical procedure, one had an oropharyngectomy (no neck treatment), one an oropharyngectomy and neck dissection, and three received neck dissections without surgical treatment to the primary. The mean time since treatment completion was 2.6 years (SD 1.7, range 0.3-9.1 years). Employment characteristics before and after treatment are presented in Table 2. Prior to diagnosis, most participants were white collar workers (67.6%), were not self-employed
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(63.2%) and were earning below the Australian average weekly income (56.3%, Table 2). The mean number of hours worked per week before treatment was 44.8 hours. Employment outcomes Of the 68 participants, 66 took time off work following their cancer diagnosis, and the majority (58, 85.3%) were working at the time of the study. Due to missing data, the time taken off from work was available for 53 participants, who took a median time of 6.0 months (IQR 0.25-30 months; mean 6.8, SD 5.8) of leave. The majority of those who were working returned to the same occupation (77.6%) and were working the same number of hours (58.6%) with the same income (65.5%). Around a third (32.1%) of the participants who returned to work were working fewer hours post-treatment. Of the ten participants (14.7%) not working at the time of the study, five had not returned due to fatigue and other ongoing side effects at 33 months, 19 months, 11 months, 10 months and 8 months post-treatment. A further participant 6 months following treatment completion was planning on resuming work at 12 months. Three participants initially returned to work posttreatment, with two subsequently retiring and one participant describing being dismissed from employment due to cognitive issues. The final participant chose to retire rather than return to working. Factors associated with employment post-treatment Current employment status Participants who were currently working reported higher overall QoL in comparison to those who were not working (mean QoL scores 117 v 96.1; p = 0.002) (Table 3). Compared with those who were not working, participants currently working also reported greater physical (mean PWB scores 23.9 vs 18.4; p = 0.04) and functional wellbeing (mean FWB scores 22.3 vs 17.7; p = 0.01). There was a trend that patients who were not working reported a higher 6
burden of head and neck symptoms on the H&N additional concerns domain (p=0.07). In an exploratory analysis of the H&N additional concerns domain, patients not working were more likely to report that they were “unhappy with how my face and neck look” (“Quite a lot” or “Very much”) compared to those who were working (Table 4). Other sociodemographic and clinical variables, and QoL domains were not statistically associated with current employment status. There was no significant difference in age between currently working and not working patients (mean age 53.6 v 57.1 respectively; p = 0.13 d=0.53) (Appendix A). Current working hours Participants returning to the same or more working hours reported higher scores in the PWB (24.9 v 21.8; p=0.02) and HNC (30.0 v24.8; p=0.008) subscales compared to those who RTW with fewer working hours (Table 3). Patients returning to same hours (versus less) were more likely to report normal eating (“I am able to eat the foods that I like” and “I can swallow naturally and easily”) and quality voice (“my voice has its usual quality and strength”; Table 4). Other sociodemographic and clinical variables, and other QoL domains were not associated with returning to the same working hours (Appendix 1).
Barriers and facilitators to returning to work Free-text responses to survey items were analysed according to four specific survey questions regarding symptoms, workplace, supportive care and financial issues, as well as overall facilitators and barriers to RTW post-treatment (Table 5). Symptoms
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The main symptom that affected participants’ ability to work was fatigue (Table 5), with 45 of the 66 respondents to this section reporting fatigue as an important barrier. Oral dysfunction also impacted on ability to work, including problems with swallowing, speech and dry mouth affecting communication and eating. Fewer participants reported psychological or cognitive issues, problems with pain and concerns about their appearance post-treatment as barriers to RTW. Workplace The most frequently cited workplace factor was support from employer and colleagues, and participants typically described support for taking leave as being helpful during and posttreatment. Some participants also described having assurance of job security, having adequate sick leave and employers providing income support as helpful. Flexible working arrangements, including changes to hours worked, modified duties and ability to work at home, helped participants RTW, while conversely, unsupportive workplaces that did not allow flexible arrangements were barriers to RTW. Supportive care Many respondents indicated their family and friends provided important support during their time off work and also in their transition back to work. Regarding supportive care received from healthcare professionals, oncologists and general hospital support were most commonly mentioned as providing support for RTW, with participants also citing help from allied health professionals addressing specific issues. Financial issues Responses here were split between people who did and did not experience financial stress during their cancer treatment. Some participants described having adequate leave entitlements (sick, annual and/or long-service leave), insurance or salary support from their 8
employer to maintain income during their time off work, while others relied on their savings or help from family members for financial support. Lack of income forced some people to RTW before they felt ready to or before they had fully recovered. The vast majority of people who attempted to receive financial aid from government services reported difficulty in both accessing support and inadequate payments, again forcing them to RTW before they felt ready. Overall facilitator When asked about the most important factor that helped people RTW, participants indicated a desire to get back to ‘normal’ and move past their cancer. Support from family, health care professionals and the workplace were also listed. In terms of recovery, having enough time off of work to allow for recovery, adopting healthy lifestyle behaviours such as eating well and exercise, regaining physical strength and managing or recovering from symptoms were all listed as helping people RTW, and some participants suggested that having more information about rehabilitation would have helped them RTW sooner. Personal attributes of determination, a positive outlook and resilience were also stated. Overall barrier The main barriers given by participants to RTW were physical issues resulting from their cancer treatment. Fatigue and oral dysfunction were the main two issues, with participants also reporting loss of strength and fitness, and unspecified treatment side effects. Some respondents reported psychological and emotional impacts of cancer impeding their ability or desire to RTW.
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Discussion In this Australian study, we investigated the RTW experience of patients with HPVassociated OPC. With the changing demographics of patients presenting with HNC, it is important to understand the RTW experience in this population as more survivors attempt to re-enter the workforce following treatment. This is the first Australian study to investigate RTW in HPV-associated OPC survivors. We found that the majority of patients (85.3%) were able to RTW. Of those who did not RTW (10/68; 14.7%), half cited ongoing treatmentrelated side effects as the predominant obstacle to RTW. While our results are broadly similar to other non-HPV HNC studies 28-30, these studies have significant patient selection heterogeneity, varying with respect to tumour location, treatment modalities, and time since completing treatment. Importantly, country-specific differences in health care systems, social support and workplace laws will significantly impact how and when patients RTW. In the context of the current study, all Australians are eligible to be treated in a public hospital and treatment is largely covered without charge, regardless of employment status. In addition, legislation mandates that full time and part time employees are entitled to accrue paid sick leave31. Participants who had successfully RTW reported higher global QoL, a finding seen in a number of HNC studies 28,29,32-38. Individually, only the functional and physical FACT-HN domains were significantly higher in those who had RTW. We did not find differences in EWB, SWB and the H&N additional concerns domain scores which is in contrast to other studies, which have found an association in the emotional and social well-being domains 32,33,37
. This may be a consequence of the small number (n=10) of study participants who did
not RTW. The finding that most participants who were not working had persistent side effects suggests that both the RTW and QoL results were driven by disease and treatmentrelated toxicity. In addition, the majority of participants self-reported that treatment side 10
effects were the major barrier to RTW. In particular fatigue and oral dysfunction had a significant impact on RTW for a large proportion of patients, as has been shown in other studies20,30,32,34,35,39-42. Participants self-reporting more issues with their physical appearance in the FACT subscale were less likely to RTW, which has also been reported in the breast cancer RTW literature43. Participants also described the importance of both family and medical support in enabling RTW, a finding seen in other series 44,45. Support from employers and work colleagues supported RTW, also seen in other qualitative studies 32,38. While not statistically significant, we observed that patients who did not RTW were numerically older. Other HNC studies have indicated a possible association between low RTW rates and older age33,42. Older patients may have been considering retirement or may have more comorbidities that impact their ability to RTW. Physical symptoms, in particular fatigue, and mental health issues may negatively impact employment, while a non-discriminatory workplace and family support may have positive effects46-49. Available data indicate a wide range of clinical, physical and psychosocial issues impact RTW in HNC survivors. Factors that are negatively associated with RTW include treatment side effects12,20,28,30,32,34-36,39-42,50,51 and poor QoL 20,28,32-37, while a supportive work environment32,40,51 and having a white collar occupation28,38,42 support RTW. This was reflected in our study, with the exception that we found no difference based on occupation types. This could be a reflection of access to healthcare and sick leave in Australia regardless of occupation type. To our knowledge, the only other study specifically addressing RTW in the HPV-associated OPC group has been the US study by Baxi et al.20. This study included 102 participants who had completed chemoradiotherapy at least 12 months prior to approach, and results showed
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that patients took on average 3.6 months to RTW. Participants in our study took approximately twice as long to RTW. Differences in workplace support, laws and social supports between Australia and the US may account for the differences in findings. The majority of participants in this study returned to the same occupation and hours they had before their diagnosis, as also seen in other HNC studies28,30,38. In addition, HNC studies have found that support from employers and co-workers, and work flexibility and modifications helped patients to RTW32,38,40,51,52 as reflected in our study. In our sample, better HNC-QoL scores were associated with returning to the same or more hours. Steiner et al. found that physical and psychological symptoms were associated with reduced working hours53. While returning to equal hours post-treatment is beneficial, participants in our study also stated the importance of reduced working hours in the beginning of the RTW process where they were more likely to experience more severe symptoms and physical deconditioning. There are a number of limitations to consider in this study. The cross-sectional study design, without baseline QoL and toxicity data, hamper the ability to draw strong conclusions, however, there is currently no prospective data in this space. Our sample size was relatively small, in particular the group who did not return to work, meaning that only factors with a very large effect size were likely to result in statistical significance. The results may not be broadly applicable to other social contexts, even within Australia, as our study was conducted at a single, centrally located metropolitan institution, where recruited patients had chosen treatment in the public system. Additionally, we did not consider the impact of medical comorbidities on RTW. Regarding the presented data, responses to individual items of the FACT H&N additional concerns subscale according to RTW status are presented to describe issues experienced by participants. While this is purely descriptive, we acknowledge the reliability of these data may be affected by non-standard use of the FACT H&N subscale. With time post-treatment ranging from less than one year to more than nine years, recall bias 12
may have affected survey responses. Though our response rate was high, non-response bias may also be a factor, and the experience of those patients who failed to attend their appointment and were not approached, those who declined enrollment, or those who did not return surveys following consent may have contributed different data. Conclusion In this study, the majority of patients with HPV-associated OPC RTW after treatment (85.3%). Patients reported a significant time off work (median 6.0 months) which could be related to poor physical and functional QoL. Side effects were the most important barrier to RTW, while workplace, social and medical support were the most important facilitators.
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Duijts SF, van Egmond MP, Spelten E, van Muijen P, Anema JR, van der Beek AJ. Physical and psychosocial problems in cancer survivors beyond return to work: a systematic review. Psychooncology. 2014;23(5):481-492.
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Gallagher KK, Sacco AG, Lee JS, et al. Association Between Multimodality Neck Treatment and Work and Leisure Impairment: A Disease-Specific Measure to Assess Both Impairment and Rehabilitation After Neck Dissection. JAMA Otolaryngol Head Neck Surg. 2015;141(10):888-893.
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Semple CJ, Dunwoody L, George Kernohan W, McCaughan E, Sullivan K. Changes and challenges to patients' lifestyle patterns following treatment for head and neck cancer. J Adv Nurs. 2008;63(1):85-93.
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Ramirez MJ, Ferriol EE, Domenech FG, Llatas MC, Suarez-Varela MM, Martinez RL. Psychosocial adjustment in patients surgically treated for laryngeal cancer. Otolaryngol Head Neck Surg. 2003;129(1):92-97.
53.
Steiner JF, Cavender TA, Nowels CT, et al. The impact of physical and psychosocial factors on work characteristics after cancer. Psychooncology. 2008;17(2):138-147.
19
Figures Figure 1 Recruitment Flowchart
20
Table 1 Characteristics of the sample (n = 68) Age at diagnosis, years Mean (SD) Range Age at enrolment, years Mean (SD) Range Sex Male Female Area of residence Metro Regional/Remote Marital status Married/de facto Separated/divorced Never married/single Widowed Education level Some high school Completed high school Trade/Community/TAFE Undergraduate degree Professional/postgraduate degree Children (<18 yrs) Yes No Missing Number of children (n=16) Mean (range) Tumour site Tonsil Base of Tongue Soft Palate Tonsil + Base of Tongue Stage at diagnosis Stage I Stage II Stage III Treatment Chemotherapy + Radiotherapy Radiotherapy only Surgery + Radiotherapy + Chemotherapy Surgery + Radiotherapy Radiotherapy regime Bilateral Unilateral Treatment duration, months Mean (SD) Range Time since end of treatment, years Mean (SD) Range
1
54.1 (6.8) 39, 64 57.0 (6.5) 41, 66 n (%) 61 (89.7) 7 (10.3) 53 (77.9) 15 (22.1) 48 (70.6) 13 (19.1) 6 (8.8) 1 (1.5) 12 (17.6) 15 (22.1) 19 (27.9) 10 (14.7) 12 (17.6) 16 (23.9) 51 (76.1) 1 1.9 (1-5) 42 (61.8) 24 (35.3) 1 (1.5) 1 (1.5) 5 (7.4) 46 (67.6) 17 (25.0) 58 (85.3) 5 (7.4) 4 (5.9) 1 (1.5) 58 (85.3) 10 (14.7) 1.6 (0.1) 1.2, 1.8 2.6 (1.7) 0.3, 9.1
Table 2 Employment characteristics of the sample (N = 68)
Occupation type (before treatment) n (%) White-collar 46 (67.6) Blue collar 22 (32.4) Self-employed (before treatment) Yes 25 (36.8) No 43 (63.2) Number of hours per week before treatment Mean (SD) 44.8 (13.6) Range 16, 80 Income level (before treatment) >$3,000/wk or >$156,000/yr 11 (17.2) $2000-2999/wk or $104,000-155,999/yr 7 (10.9) $1500-1999/wk or $78,000-103,999/yr 10 (15.6) $1000-1499/wk or $52,000-77,999/yr 17 (26.6) $650-999/wk or $33,800-51,999/yr 11 (17.2) $400-649/wk or $20,800-33,799/yr 5 (7.8) $1-399/wk or $1-20,799/yr 3 (4.7) Missing 4 Time off work Yes 66 (97.1) No 2 (2.9) Time off work (months) Median (IQR) 6 (4, 10) Range 0.25, 36 Returned to work Yes 58 (85.3) No 10 (14.7) Returned to same occupation (n=58) Yes 45 (80.4) No 11 (19.6) Missing 2 Change in hours worked after treatment (n=58) Same 34 (60.7) More 4 (7.1) Fewer 18 (32.1) Missing 2 Number of hours per week after treatment (n=58) Mean (SD) 39.0 (13.8) Range 4.5-80 Income after treatment (n=58) Same 38 (69.1) More 6 (10.9) Less 11 (20.0) Missing 3
2
Table 3 Quality of Life Scores (FACT-HN and subscales) for all patients and by work status
FACT H&N Scale FACT-HN Total score Physical Wellbeing Social Wellbeing Emotional Wellbeing Functional Wellbeing H&N Additional concerns
0
Total (n=68) mean (SD) 113.7 (20.0) 23.1 (4.8) 21.7 (5.8) 19.8 (3.7) 21.6 (5.6) 27.7 (7.1)
Currently working Yes (n=58) No (n=10) mean (SD) mean (SD) 117.0 (17.5) 96.1 (24.2) 23.9 (3.8) 18.4 (7.0) 22.3 (5.3) 18.1 (7.1) 20.1 (2.9) 18.0 (6.5) 22.3 (5.0) 17.7 (7.1) 28.4 (6.9) 23.9 (7.4)
p value 0.002 0.04 0.1 0.3 0.01 0.07
Returned to same/more hours Yes (n=38) No (n=18) mean (SD) mean (SD) 120.8 (16.5) 109.4 (18.5) 24.9 (3.0) 21.8 (4.7) 22.3 (5.6) 23.0 (4.8) 20.2 (2.7) 19.9 (3.5) 23.1 (4.5) 20.7 (6.0) 30.0 (6.7) 24.8 (6.5)
p value 0.03 0.02 0.7 0.7 0.1 0.008
Table 4 Proportion of respondents who reported 'Quite a bit/Very much' to FACT-H&N Additional concerns scale items (n=68)
Item I am able to eat the foods that I like My mouth is dry* I have trouble breathing* My voice has its usual quality and strength I am able to eat as much food as I want I am unhappy with how my face and neck look* I can swallow easily and naturally I am able to communicate with others I can eat solid foods I have pain in my mouth, throat or neck*
* Note: negatively worded items
1
Currently working Yes (n=58) No (n=10) n (%) n (%) 28 (48.3) 5 (50.0) 34 (58.6) 7 (70.0) 1 (1.7) 0 (0) 39 (67.2) 6 (60.0) 36 (62.1) 5 (50.0) 10 (17.2) 5 (50.0) 27 (46.6) 3 (30.0) 53 (91.4) 8 (80.0) 47 (81.0) 7 (70.0) 5 (8.6) 2 (20.0)
Returned to same/more hours Yes (n=38) No (n=18) n (%) n (%) 22 (57.9) 5 (27.8) 21 (55.3) 13 (72.2) 1 (2.6) 0 (0) 29 (76.3) 8 (44.4) 27 (71.1) 8 (44.4) 7 (18.4) 3 (16.7) 19 (50.0) 7 (38.9) 34 (89.5) 17 (94.4) 35 (92.1) 10 (55.6) 3 (7.9) 2 (11.1)
Table 5. Content analysis of free-text responses of facilitators and barriers to returning to work (n=68)
Categories SYMPTOMS Fatigue Oral dysfunction: Swallowing/eating problems Speech problems Dry mouth Weight loss Anxiety/depression Cognitive problems Pain Appearance concerns WORKPLACE Supportive boss and colleagues Changes to work: Flexible hours Modified duties Work location Sick leave and time off Self-employed and in control Job security Unsupportive workplace Income support from employer SUPPORTIVE CARE
n 66 45
Family and friends HCP support: Doctor (oncologist) General hospital support Dietician Nurse Speech therapist Psychologist/counsellor GP Physiotherapy Peer support
18
2
18 13 10 17 7 5 4 3 60 28 16 5 3 8 8 5 5 4 55
15 13 10 7 4 4 3 2 2
Sample participant comments “Fatigue; being a postie [postal delivery worker] is a physically hard job and I was very concerned I would fall off my bike” (Male, 54) “Fatigue. I felt there was little appreciation at work how tired I was. I was fine when I could pace myself at my desk, but found great difficulty in going from one meeting to another” (Male, 66) “Speaking; difficulty communicating in important meetings, clients having difficulty in being able to hear” (Male, 45) “I lost 30% of my muscle mass, everything was a strain. At first I could only work 2 hours a day…” (Male, 62) “Depression. I wish someone had told me that post-cancer depression was not uncommon” (Male, 60) “I found I was forgetting a lot of things and this was not satisfactory with my boss. There was no help offered from my employer and I was dismissed from their services” (Male, 61)
“People very supportive and I could easily take time off if needed. Employer was very supportive as were my work mates. This helped enormously” (Male, 62) “Due to fatigue my boss helped out with giving me lighter duties and allowing me to start back on shorter hours” (Male, 57) “Although I returned in 6 weeks instead of recommended 6 months, I was working from home at my own pace.” (Male, 45) “Had my own business and could choose my own hours” (Male, 62) “Company told me my job was waiting for me and to take as long as I needed” (Male, 62) “Work refused a part-time option where if possible I would have gone to 2 days each week” (Male, 66) “Boss changed my status from part-time to full-time so he could pay me right through as long service leave.” (Female, 62)
“Wife; encouraged me to start work slowly and she never pushed me at all” (Male, 63) “A wide range of professionals from Peter Mac [hospital] were extremely influential during recovery from treatment. Their support and encouragement helped me determine an appropriate time to return to work” (Male, 61) “The sense of being in the hands of the caring professionals gave me confidence to return” (Male 61) “The dietician was the most helpful in helping me get back some of the weight loss” (Male, 57) “I received support from speech therapist which helped me a lot in being able to eat as soon as I was able” (Male, 65) “Once treatment was complete other than check-ups, the support just stops. I joined a tonsil cancer group on Facebook to help understand how to deal with the side effects” (Male, 45)
FINANCIAL ISSUES
61
Leave entitlements Needed income Government support Income protection insurance Savings Help from family members Support from work
13 11 11 9 7 6 3
OVERALL FACILITATOR
63
Wanting to return to ‘normal’ Family support Enough time to recover Exercise and healthy lifestyle Supportive workplace Support from HCPs Regaining strength Determination, positivity, resilience Managing/overcoming symptoms Information about recovery and RTW
10 10 8 7 7 6 6 6 5 5
OVERALL BARRIER
58
Physical symptom issues: Fatigue Oral dysfunction (speech, swallowing, dry mouth) Loss of strength/fitness General treatment side effects Psychological/emotional impacts Time to recover
3
21 21 14 7 7 3
“I was very fortunate having worked with the company for just over 20 years, I had accrued plenty of sick leave to cover my 4 months off” (Female, 58) “Bills were mounting. I had to go back.” (Male, 59) “Burned through savings, required personal loan to continue to pay rent, Centrelink [government agency] payments are totally inadequate therefore I had to return to work” (Male, 41) “My ability to support myself with savings ensured I was able to focus on my health and not return to work too early” (Male, 57) “Financial support from family enabled me to take it slowly” (Male, 51) “Fully paid by company with no pressure to return to work and didn't need outside financial assistance” (Male, 60) “Just wanting to get back to work; for things to return to normal as possible” (Male, 62) “TIME quite simply. It took a long time to regain the weight I lost and return to sufficient energy levels” (Female, 55) “Employer was very supportive allowing me to work less hours at full pay” (Female, 58) “Support from Peter Mac [hospital] staff and giving me objectives and incentives to return to work; they have been outstanding” (Male, 64) “For me it was getting my strength back so as to cope with daily routine, work and kids” (Male, 45) “Determination. Push through pain barriers” (Male, 52) “Being free of coughing and occasional gagging when swallowing. Not being tired” (Male, 65) “Understanding and having the knowledge of what I needed to do to rehabilitate. If I had this knowledge to begin with, my recovery would have been quicker” (Male, 65) “As I work in construction it was just being weak and fatigued” (Male, 51) “My mouth becomes dry and I develop ulcers when I lecture all day” (Female, 55) “I was not able to work physically until I gained strength back” (Male, 45) “Effect of the drugs I was on during chemotherapy and radiotherapy, plus my ongoing maintenance medicines” (Male, 60) “I feel unable or unwilling to return to [my] previous employment through age, weariness and understanding that life is short, and [I] should follow dreams of happiness. I am disillusioned with work as it was and want to follow other directions” (Male, 52) “It took time to recover from being tired. The treatment was intense and took time to complete” (Male, 53)
S0360-3016(19)33751-4
DOI:
https://doi.org/10.1016/j.ijrobp.2019.09.001
Reference:
ROB 25927
To appear in:
International Journal of Radiation Oncology • Biology • Physics
Received Date: 24 May 2019 Revised Date:
6 August 2019
Accepted Date: 4 September 2019
Please cite this article as: Morales CZ, McDowell L, Lisy K, Piper A, Jefford M, Return to work in survivors of human papillomavirus-associated oropharyngeal cancer: An Australian experience, International Journal of Radiation Oncology • Biology • Physics (2019), doi: https://doi.org/10.1016/ j.ijrobp.2019.09.001. This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Elsevier Inc. All rights reserved.
Return to work in survivors of human papillomavirus-associated oropharyngeal cancer: An Australian experience Short title: RTW in Australian HPV-OPC survivors Claudia Zecena Morales1, MD, Lachlan McDowell2, MBBS, Karolina Lisy1, PhD, Amanda Piper3, MHA/MPH, Michael Jefford1, 3, 4, MBBS PhD 1
Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, Melbourne
Victoria, Australia 2
Division of Radiation Oncology, Peter MacCallum Cancer Centre, Melbourne Victoria,
Australia 3
Australian Cancer Survivorship Centre, a Richard Pratt legacy, Melbourne Victoria,
Australia 4
Sir Peter MacCallum Department of Oncology, University of Melbourne, Parkville Victoria,
Australia Corresponding Author Prof Michael Jefford Peter MacCallum Cancer Centre 305 Grattan Street Melbourne Victoria 8000 Australia Email: [email protected] Telephone: +61 3 8559 7902 Corresponding Statistical Author Claudia Zecena Morales Peter MacCallum Cancer Centre 305 Grattan Street
Melbourne Victoria 8000 Australia Email: [email protected] Telephone: +61 3 8559 5000 Conflict of Interest: None Funding: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. Acknowledgements Thank you to Ms Allison Drosdowsky from the Department of Cancer Experiences Research, PMCC, Melbourne, Australia for statistical analysis. Thank you to the Head and Neck Division of Radiation Oncology; Dr Tsien Fua, Dr Leta D’Costa, Dr Andrew Coleman, Dr Albert Tiong and Dr Chen Liu for participant recruitment.
Abstract Introduction Human papillomavirus (HPV)-associated oropharyngeal cancer (OPC) commonly affects people of working age, yet there is limited data regarding the return to work (RTW) experience in this cohort. This study aimed to investigate the proportion of survivors currently working following completion of radiotherapy (RT), and explore potential facilitators and barriers to working after treatment. Methods A cross-sectional, single-institutional study was undertaken at the xxx. Eligible participants were aged 18-65 years at diagnosis; employed at or within the three months prior to diagnosis, and had completed curative treatment for HPV-associated OPC ≥ four months prior to enrollment. Participants completed a paper-based survey to assess baseline demographics, employment status and quality of life (QoL; FACT-HN). Open-ended questions explored factors affecting RTW. Associations between current employment status and various disease, treatment and demographic variables, and with QoL, were examined. Free-text items were analysed by summarizing content analysis. Results Of 93 participants approached, 68 responded (73.1%). Mean age was 54.1 years (range 3964) and 89.7% were male. Most participants (67.6%) had stage II disease and were treated with chemoradiation (85.3%). Mean time post-treatment was 2.6 years (0.3-9.1). 58/68 participants (85.3%) were working at enrollment; median time to RTW was 6.0 months (IQR 4-10 months); 45 (77.6%) in the same role and 35 (60.3%) to the same number of hours. Ten were not working; three had retired; five reported persistent and significant treatment toxicity preventing employment. Survivors currently working reported higher physical, functional and
0
global QoL scores. Access to leave and support from treating doctors were facilitators for RTW, whereas fatigue was frequently reported as a barrier to RTW. Conclusion With time, the majority of participants with HPV-associated OPC RTW following radiotherapy. Attention to symptom management and support from the workplace may enable more successful RTW.
1
Introduction Head and neck cancer (HNC) is the 7th most common cancer in Australia1 and the 8th most common cancer in males in the United States2. Historically, oropharyngeal cancer (OPC) most commonly affected men over 60 years, of low socioeconomic status and with a history of heavy tobacco and alcohol use3. The rising incidence of human papillomavirus (HPV)associated OPC has resulted in a rapid increase in the number of younger, fitter and employed patients with HNC 3-5. A consequence of this shifting demographic is the higher proportion of HNC survivors expressing a strong desire to return to work (RTW) following treatment. Although employment following cancer treatment provides many benefits to cancer survivors, including a sense of identity, control, a sense of capacity, belonging, and financial security610
, many face difficulties in retaining or returning to employment following treatment11. A
meta-analysis by De Boer et al. reported that cancer survivors are 1.37 times more likely to be unemployed compared to healthy individuals12. Based on 2008-2010 United States data, the total annual per capita lost productivity was US$3593 (diagnosed >1 year ago) and $4694 (diagnosed <1 year ago) in cancer survivors of working age13. In a recent Australian study, unemployment in cancer survivors was estimated to result in a loss of A$1.7 billion (at January 2018, approximately US$1.22 billion or €1.06 billion) in GDP14. Unemployed cancer survivors are more likely to experience financial toxicity in comparison to employed cancer survivors including psychological distress associated with finances15. Compared to other cancer types, HNC survivors may experience higher rates of unemployment 16-19. To date, studies reporting RTW in HNC populations have largely focused on surgical cohorts or have had heterogeneous inclusion criteria, with limited relevance to HPV-associated OPC survivors who are younger and thus likely have a greater need to RTW. Published data on RTW in this group is extremely limited, with only one US-based study identified20. Given the 2
differences between the US and Australian contexts, importantly that Australia has a universal healthcare system and employees are legally entitled to paid sick leave, a study investigating the Australian experience is warranted. The aims of the present study were to understand the RTW experience of patients with HPV-associated OPC treated primarily with radiation, specifically in the Australian context.
Methods and materials Participants Patients undergoing follow up at xxx were identified from an institutional database and recruited between February and April 2018 (Figure 1). All participants provided written informed consent. Eligible participants were: (1) diagnosed with HPV-positive OPC; (2) aged 18-65 years at diagnosis; (3) employed at or within the three months prior to diagnosis; and (4) had completed curative treatment ≥ four months prior to approach. Only definitive oncological procedures (radical oropharyngectomy, neck dissection) were defined as surgical i.e. diagnostic tonsillectomies and excisional nodal biopsies were not considered as surgical cases. Participants were required to complete a paper-based survey and provide informed consent in English. Participants were excluded if they had a history of acute psychiatric illness or were deemed inappropriate by the treating team for other reasons, including placing additional burden on patients experiencing stress. Participants did not receive any form of compensation for study participation. The study was approved by the xxx. Measures Demographics Medical records were accessed to collect demographic and clinical data (age at diagnosis and enrollment, sex, area of residence, tumour site, stage at diagnosis based on the updated American Joint Committee on Cancer Staging Manual, 8th Edition21, and treatment received).
3
Participants reported on education, marital status, income level (pre- and post-cancer) and number of dependents. Participant-completed measures Quality of life (QoL) was assessed using the Functional Assessment of Cancer Therapy Head and Neck (FACT-H&N), consisting of the FACT-General (FACT-G) questionnaire (27 items assessing physical (PWB), social (SWB), emotional (EWB), and functional (FWB) wellbeing domains) and a 12-item inventory specific to survivors of HNC 22. Scoring is on a 5point Likert response scale anchored between “Not at All” and “Very Much” (0-4; maximum score is 148). A survey developed by the study team collected employment details before and after treatment (occupation, work hours, whether self-employed, time off work and current working status). Questions further asked about the impact of four factors on RTW (symptoms, workplace, supportive care and financial issues) on a 5-point Likert response scale and included open-ended responses for each factor. Two final open-ended questions invited responses about the most important facilitators or barriers to RTW. Data and statistical analysis Descriptive statistics were used to summarise participant characteristics. Income levels were bracketed pragmatically (average full-time weekly income in Australia in November 2017 was A$1567.90/week)23. Occupations were initially classified based on the International Standard Classification of Occupations24 and further classified into white collar or blue collar occupations based on the European Working Conditions Survey25. Employment outcomes, including current working status and the returning to the same or more hours at work were analysed for associations with selected demographics and clinical variables and patient-reported outcome measures (QoL; FACT-H&N and subscales). 4
Associations between variables were analysed using appropriate statistical tests: categoricalcontinuous variables were analysed using independent t-tests and categorical-categorical variables using Chi-square tests. A p value of < 0.05 was considered statistically significant for all tests. Effect sizes were calculated using Cohen’s guideline26. Statistical analyses were performed using Statistical Package for the Social Sciences (SPSS) version 23.0. Responses to open-ended questions were analysed separately for each question using summarizing content analysis to generate categories of facilitators and barriers to returning to work27. Each category is presented alongside a frequency count of the total number of responses contributing to that category, with some categories illustrated by verbatim participant quotes. Results Of the 93 patients approached to participate in the study, 86 consented and 68 returned the survey (response rate 73.1%) (Figure 1). Baseline characteristics of the sample are summarised in Table 1. The mean age at diagnosis and recruitment was 54.1 years and 57.0 years, respectively. The majority of participants were male (89.7%), living in a metropolitan area (77.9%) and were tertiary educated (60.2%). The majority of participants were treated with primary chemoradiation (85.3%). Of the five participants who received a definitive surgical procedure, one had an oropharyngectomy (no neck treatment), one an oropharyngectomy and neck dissection, and three received neck dissections without surgical treatment to the primary. The mean time since treatment completion was 2.6 years (SD 1.7, range 0.3-9.1 years). Employment characteristics before and after treatment are presented in Table 2. Prior to diagnosis, most participants were white collar workers (67.6%), were not self-employed
5
(63.2%) and were earning below the Australian average weekly income (56.3%, Table 2). The mean number of hours worked per week before treatment was 44.8 hours. Employment outcomes Of the 68 participants, 66 took time off work following their cancer diagnosis, and the majority (58, 85.3%) were working at the time of the study. Due to missing data, the time taken off from work was available for 53 participants, who took a median time of 6.0 months (IQR 0.25-30 months; mean 6.8, SD 5.8) of leave. The majority of those who were working returned to the same occupation (77.6%) and were working the same number of hours (58.6%) with the same income (65.5%). Around a third (32.1%) of the participants who returned to work were working fewer hours post-treatment. Of the ten participants (14.7%) not working at the time of the study, five had not returned due to fatigue and other ongoing side effects at 33 months, 19 months, 11 months, 10 months and 8 months post-treatment. A further participant 6 months following treatment completion was planning on resuming work at 12 months. Three participants initially returned to work posttreatment, with two subsequently retiring and one participant describing being dismissed from employment due to cognitive issues. The final participant chose to retire rather than return to working. Factors associated with employment post-treatment Current employment status Participants who were currently working reported higher overall QoL in comparison to those who were not working (mean QoL scores 117 v 96.1; p = 0.002) (Table 3). Compared with those who were not working, participants currently working also reported greater physical (mean PWB scores 23.9 vs 18.4; p = 0.04) and functional wellbeing (mean FWB scores 22.3 vs 17.7; p = 0.01). There was a trend that patients who were not working reported a higher 6
burden of head and neck symptoms on the H&N additional concerns domain (p=0.07). In an exploratory analysis of the H&N additional concerns domain, patients not working were more likely to report that they were “unhappy with how my face and neck look” (“Quite a lot” or “Very much”) compared to those who were working (Table 4). Other sociodemographic and clinical variables, and QoL domains were not statistically associated with current employment status. There was no significant difference in age between currently working and not working patients (mean age 53.6 v 57.1 respectively; p = 0.13 d=0.53) (Appendix A). Current working hours Participants returning to the same or more working hours reported higher scores in the PWB (24.9 v 21.8; p=0.02) and HNC (30.0 v24.8; p=0.008) subscales compared to those who RTW with fewer working hours (Table 3). Patients returning to same hours (versus less) were more likely to report normal eating (“I am able to eat the foods that I like” and “I can swallow naturally and easily”) and quality voice (“my voice has its usual quality and strength”; Table 4). Other sociodemographic and clinical variables, and other QoL domains were not associated with returning to the same working hours (Appendix 1).
Barriers and facilitators to returning to work Free-text responses to survey items were analysed according to four specific survey questions regarding symptoms, workplace, supportive care and financial issues, as well as overall facilitators and barriers to RTW post-treatment (Table 5). Symptoms
7
The main symptom that affected participants’ ability to work was fatigue (Table 5), with 45 of the 66 respondents to this section reporting fatigue as an important barrier. Oral dysfunction also impacted on ability to work, including problems with swallowing, speech and dry mouth affecting communication and eating. Fewer participants reported psychological or cognitive issues, problems with pain and concerns about their appearance post-treatment as barriers to RTW. Workplace The most frequently cited workplace factor was support from employer and colleagues, and participants typically described support for taking leave as being helpful during and posttreatment. Some participants also described having assurance of job security, having adequate sick leave and employers providing income support as helpful. Flexible working arrangements, including changes to hours worked, modified duties and ability to work at home, helped participants RTW, while conversely, unsupportive workplaces that did not allow flexible arrangements were barriers to RTW. Supportive care Many respondents indicated their family and friends provided important support during their time off work and also in their transition back to work. Regarding supportive care received from healthcare professionals, oncologists and general hospital support were most commonly mentioned as providing support for RTW, with participants also citing help from allied health professionals addressing specific issues. Financial issues Responses here were split between people who did and did not experience financial stress during their cancer treatment. Some participants described having adequate leave entitlements (sick, annual and/or long-service leave), insurance or salary support from their 8
employer to maintain income during their time off work, while others relied on their savings or help from family members for financial support. Lack of income forced some people to RTW before they felt ready to or before they had fully recovered. The vast majority of people who attempted to receive financial aid from government services reported difficulty in both accessing support and inadequate payments, again forcing them to RTW before they felt ready. Overall facilitator When asked about the most important factor that helped people RTW, participants indicated a desire to get back to ‘normal’ and move past their cancer. Support from family, health care professionals and the workplace were also listed. In terms of recovery, having enough time off of work to allow for recovery, adopting healthy lifestyle behaviours such as eating well and exercise, regaining physical strength and managing or recovering from symptoms were all listed as helping people RTW, and some participants suggested that having more information about rehabilitation would have helped them RTW sooner. Personal attributes of determination, a positive outlook and resilience were also stated. Overall barrier The main barriers given by participants to RTW were physical issues resulting from their cancer treatment. Fatigue and oral dysfunction were the main two issues, with participants also reporting loss of strength and fitness, and unspecified treatment side effects. Some respondents reported psychological and emotional impacts of cancer impeding their ability or desire to RTW.
9
Discussion In this Australian study, we investigated the RTW experience of patients with HPVassociated OPC. With the changing demographics of patients presenting with HNC, it is important to understand the RTW experience in this population as more survivors attempt to re-enter the workforce following treatment. This is the first Australian study to investigate RTW in HPV-associated OPC survivors. We found that the majority of patients (85.3%) were able to RTW. Of those who did not RTW (10/68; 14.7%), half cited ongoing treatmentrelated side effects as the predominant obstacle to RTW. While our results are broadly similar to other non-HPV HNC studies 28-30, these studies have significant patient selection heterogeneity, varying with respect to tumour location, treatment modalities, and time since completing treatment. Importantly, country-specific differences in health care systems, social support and workplace laws will significantly impact how and when patients RTW. In the context of the current study, all Australians are eligible to be treated in a public hospital and treatment is largely covered without charge, regardless of employment status. In addition, legislation mandates that full time and part time employees are entitled to accrue paid sick leave31. Participants who had successfully RTW reported higher global QoL, a finding seen in a number of HNC studies 28,29,32-38. Individually, only the functional and physical FACT-HN domains were significantly higher in those who had RTW. We did not find differences in EWB, SWB and the H&N additional concerns domain scores which is in contrast to other studies, which have found an association in the emotional and social well-being domains 32,33,37
. This may be a consequence of the small number (n=10) of study participants who did
not RTW. The finding that most participants who were not working had persistent side effects suggests that both the RTW and QoL results were driven by disease and treatmentrelated toxicity. In addition, the majority of participants self-reported that treatment side 10
effects were the major barrier to RTW. In particular fatigue and oral dysfunction had a significant impact on RTW for a large proportion of patients, as has been shown in other studies20,30,32,34,35,39-42. Participants self-reporting more issues with their physical appearance in the FACT subscale were less likely to RTW, which has also been reported in the breast cancer RTW literature43. Participants also described the importance of both family and medical support in enabling RTW, a finding seen in other series 44,45. Support from employers and work colleagues supported RTW, also seen in other qualitative studies 32,38. While not statistically significant, we observed that patients who did not RTW were numerically older. Other HNC studies have indicated a possible association between low RTW rates and older age33,42. Older patients may have been considering retirement or may have more comorbidities that impact their ability to RTW. Physical symptoms, in particular fatigue, and mental health issues may negatively impact employment, while a non-discriminatory workplace and family support may have positive effects46-49. Available data indicate a wide range of clinical, physical and psychosocial issues impact RTW in HNC survivors. Factors that are negatively associated with RTW include treatment side effects12,20,28,30,32,34-36,39-42,50,51 and poor QoL 20,28,32-37, while a supportive work environment32,40,51 and having a white collar occupation28,38,42 support RTW. This was reflected in our study, with the exception that we found no difference based on occupation types. This could be a reflection of access to healthcare and sick leave in Australia regardless of occupation type. To our knowledge, the only other study specifically addressing RTW in the HPV-associated OPC group has been the US study by Baxi et al.20. This study included 102 participants who had completed chemoradiotherapy at least 12 months prior to approach, and results showed
11
that patients took on average 3.6 months to RTW. Participants in our study took approximately twice as long to RTW. Differences in workplace support, laws and social supports between Australia and the US may account for the differences in findings. The majority of participants in this study returned to the same occupation and hours they had before their diagnosis, as also seen in other HNC studies28,30,38. In addition, HNC studies have found that support from employers and co-workers, and work flexibility and modifications helped patients to RTW32,38,40,51,52 as reflected in our study. In our sample, better HNC-QoL scores were associated with returning to the same or more hours. Steiner et al. found that physical and psychological symptoms were associated with reduced working hours53. While returning to equal hours post-treatment is beneficial, participants in our study also stated the importance of reduced working hours in the beginning of the RTW process where they were more likely to experience more severe symptoms and physical deconditioning. There are a number of limitations to consider in this study. The cross-sectional study design, without baseline QoL and toxicity data, hamper the ability to draw strong conclusions, however, there is currently no prospective data in this space. Our sample size was relatively small, in particular the group who did not return to work, meaning that only factors with a very large effect size were likely to result in statistical significance. The results may not be broadly applicable to other social contexts, even within Australia, as our study was conducted at a single, centrally located metropolitan institution, where recruited patients had chosen treatment in the public system. Additionally, we did not consider the impact of medical comorbidities on RTW. Regarding the presented data, responses to individual items of the FACT H&N additional concerns subscale according to RTW status are presented to describe issues experienced by participants. While this is purely descriptive, we acknowledge the reliability of these data may be affected by non-standard use of the FACT H&N subscale. With time post-treatment ranging from less than one year to more than nine years, recall bias 12
may have affected survey responses. Though our response rate was high, non-response bias may also be a factor, and the experience of those patients who failed to attend their appointment and were not approached, those who declined enrollment, or those who did not return surveys following consent may have contributed different data. Conclusion In this study, the majority of patients with HPV-associated OPC RTW after treatment (85.3%). Patients reported a significant time off work (median 6.0 months) which could be related to poor physical and functional QoL. Side effects were the most important barrier to RTW, while workplace, social and medical support were the most important facilitators.
13
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19
Figures Figure 1 Recruitment Flowchart
20
Table 1 Characteristics of the sample (n = 68) Age at diagnosis, years Mean (SD) Range Age at enrolment, years Mean (SD) Range Sex Male Female Area of residence Metro Regional/Remote Marital status Married/de facto Separated/divorced Never married/single Widowed Education level Some high school Completed high school Trade/Community/TAFE Undergraduate degree Professional/postgraduate degree Children (<18 yrs) Yes No Missing Number of children (n=16) Mean (range) Tumour site Tonsil Base of Tongue Soft Palate Tonsil + Base of Tongue Stage at diagnosis Stage I Stage II Stage III Treatment Chemotherapy + Radiotherapy Radiotherapy only Surgery + Radiotherapy + Chemotherapy Surgery + Radiotherapy Radiotherapy regime Bilateral Unilateral Treatment duration, months Mean (SD) Range Time since end of treatment, years Mean (SD) Range
1
54.1 (6.8) 39, 64 57.0 (6.5) 41, 66 n (%) 61 (89.7) 7 (10.3) 53 (77.9) 15 (22.1) 48 (70.6) 13 (19.1) 6 (8.8) 1 (1.5) 12 (17.6) 15 (22.1) 19 (27.9) 10 (14.7) 12 (17.6) 16 (23.9) 51 (76.1) 1 1.9 (1-5) 42 (61.8) 24 (35.3) 1 (1.5) 1 (1.5) 5 (7.4) 46 (67.6) 17 (25.0) 58 (85.3) 5 (7.4) 4 (5.9) 1 (1.5) 58 (85.3) 10 (14.7) 1.6 (0.1) 1.2, 1.8 2.6 (1.7) 0.3, 9.1
Table 2 Employment characteristics of the sample (N = 68)
Occupation type (before treatment) n (%) White-collar 46 (67.6) Blue collar 22 (32.4) Self-employed (before treatment) Yes 25 (36.8) No 43 (63.2) Number of hours per week before treatment Mean (SD) 44.8 (13.6) Range 16, 80 Income level (before treatment) >$3,000/wk or >$156,000/yr 11 (17.2) $2000-2999/wk or $104,000-155,999/yr 7 (10.9) $1500-1999/wk or $78,000-103,999/yr 10 (15.6) $1000-1499/wk or $52,000-77,999/yr 17 (26.6) $650-999/wk or $33,800-51,999/yr 11 (17.2) $400-649/wk or $20,800-33,799/yr 5 (7.8) $1-399/wk or $1-20,799/yr 3 (4.7) Missing 4 Time off work Yes 66 (97.1) No 2 (2.9) Time off work (months) Median (IQR) 6 (4, 10) Range 0.25, 36 Returned to work Yes 58 (85.3) No 10 (14.7) Returned to same occupation (n=58) Yes 45 (80.4) No 11 (19.6) Missing 2 Change in hours worked after treatment (n=58) Same 34 (60.7) More 4 (7.1) Fewer 18 (32.1) Missing 2 Number of hours per week after treatment (n=58) Mean (SD) 39.0 (13.8) Range 4.5-80 Income after treatment (n=58) Same 38 (69.1) More 6 (10.9) Less 11 (20.0) Missing 3
2
Table 3 Quality of Life Scores (FACT-HN and subscales) for all patients and by work status
FACT H&N Scale FACT-HN Total score Physical Wellbeing Social Wellbeing Emotional Wellbeing Functional Wellbeing H&N Additional concerns
0
Total (n=68) mean (SD) 113.7 (20.0) 23.1 (4.8) 21.7 (5.8) 19.8 (3.7) 21.6 (5.6) 27.7 (7.1)
Currently working Yes (n=58) No (n=10) mean (SD) mean (SD) 117.0 (17.5) 96.1 (24.2) 23.9 (3.8) 18.4 (7.0) 22.3 (5.3) 18.1 (7.1) 20.1 (2.9) 18.0 (6.5) 22.3 (5.0) 17.7 (7.1) 28.4 (6.9) 23.9 (7.4)
p value 0.002 0.04 0.1 0.3 0.01 0.07
Returned to same/more hours Yes (n=38) No (n=18) mean (SD) mean (SD) 120.8 (16.5) 109.4 (18.5) 24.9 (3.0) 21.8 (4.7) 22.3 (5.6) 23.0 (4.8) 20.2 (2.7) 19.9 (3.5) 23.1 (4.5) 20.7 (6.0) 30.0 (6.7) 24.8 (6.5)
p value 0.03 0.02 0.7 0.7 0.1 0.008
Table 4 Proportion of respondents who reported 'Quite a bit/Very much' to FACT-H&N Additional concerns scale items (n=68)
Item I am able to eat the foods that I like My mouth is dry* I have trouble breathing* My voice has its usual quality and strength I am able to eat as much food as I want I am unhappy with how my face and neck look* I can swallow easily and naturally I am able to communicate with others I can eat solid foods I have pain in my mouth, throat or neck*
* Note: negatively worded items
1
Currently working Yes (n=58) No (n=10) n (%) n (%) 28 (48.3) 5 (50.0) 34 (58.6) 7 (70.0) 1 (1.7) 0 (0) 39 (67.2) 6 (60.0) 36 (62.1) 5 (50.0) 10 (17.2) 5 (50.0) 27 (46.6) 3 (30.0) 53 (91.4) 8 (80.0) 47 (81.0) 7 (70.0) 5 (8.6) 2 (20.0)
Returned to same/more hours Yes (n=38) No (n=18) n (%) n (%) 22 (57.9) 5 (27.8) 21 (55.3) 13 (72.2) 1 (2.6) 0 (0) 29 (76.3) 8 (44.4) 27 (71.1) 8 (44.4) 7 (18.4) 3 (16.7) 19 (50.0) 7 (38.9) 34 (89.5) 17 (94.4) 35 (92.1) 10 (55.6) 3 (7.9) 2 (11.1)
Table 5. Content analysis of free-text responses of facilitators and barriers to returning to work (n=68)
Categories SYMPTOMS Fatigue Oral dysfunction: Swallowing/eating problems Speech problems Dry mouth Weight loss Anxiety/depression Cognitive problems Pain Appearance concerns WORKPLACE Supportive boss and colleagues Changes to work: Flexible hours Modified duties Work location Sick leave and time off Self-employed and in control Job security Unsupportive workplace Income support from employer SUPPORTIVE CARE
n 66 45
Family and friends HCP support: Doctor (oncologist) General hospital support Dietician Nurse Speech therapist Psychologist/counsellor GP Physiotherapy Peer support
18
2
18 13 10 17 7 5 4 3 60 28 16 5 3 8 8 5 5 4 55
15 13 10 7 4 4 3 2 2
Sample participant comments “Fatigue; being a postie [postal delivery worker] is a physically hard job and I was very concerned I would fall off my bike” (Male, 54) “Fatigue. I felt there was little appreciation at work how tired I was. I was fine when I could pace myself at my desk, but found great difficulty in going from one meeting to another” (Male, 66) “Speaking; difficulty communicating in important meetings, clients having difficulty in being able to hear” (Male, 45) “I lost 30% of my muscle mass, everything was a strain. At first I could only work 2 hours a day…” (Male, 62) “Depression. I wish someone had told me that post-cancer depression was not uncommon” (Male, 60) “I found I was forgetting a lot of things and this was not satisfactory with my boss. There was no help offered from my employer and I was dismissed from their services” (Male, 61)
“People very supportive and I could easily take time off if needed. Employer was very supportive as were my work mates. This helped enormously” (Male, 62) “Due to fatigue my boss helped out with giving me lighter duties and allowing me to start back on shorter hours” (Male, 57) “Although I returned in 6 weeks instead of recommended 6 months, I was working from home at my own pace.” (Male, 45) “Had my own business and could choose my own hours” (Male, 62) “Company told me my job was waiting for me and to take as long as I needed” (Male, 62) “Work refused a part-time option where if possible I would have gone to 2 days each week” (Male, 66) “Boss changed my status from part-time to full-time so he could pay me right through as long service leave.” (Female, 62)
“Wife; encouraged me to start work slowly and she never pushed me at all” (Male, 63) “A wide range of professionals from Peter Mac [hospital] were extremely influential during recovery from treatment. Their support and encouragement helped me determine an appropriate time to return to work” (Male, 61) “The sense of being in the hands of the caring professionals gave me confidence to return” (Male 61) “The dietician was the most helpful in helping me get back some of the weight loss” (Male, 57) “I received support from speech therapist which helped me a lot in being able to eat as soon as I was able” (Male, 65) “Once treatment was complete other than check-ups, the support just stops. I joined a tonsil cancer group on Facebook to help understand how to deal with the side effects” (Male, 45)
FINANCIAL ISSUES
61
Leave entitlements Needed income Government support Income protection insurance Savings Help from family members Support from work
13 11 11 9 7 6 3
OVERALL FACILITATOR
63
Wanting to return to ‘normal’ Family support Enough time to recover Exercise and healthy lifestyle Supportive workplace Support from HCPs Regaining strength Determination, positivity, resilience Managing/overcoming symptoms Information about recovery and RTW
10 10 8 7 7 6 6 6 5 5
OVERALL BARRIER
58
Physical symptom issues: Fatigue Oral dysfunction (speech, swallowing, dry mouth) Loss of strength/fitness General treatment side effects Psychological/emotional impacts Time to recover
3
21 21 14 7 7 3
“I was very fortunate having worked with the company for just over 20 years, I had accrued plenty of sick leave to cover my 4 months off” (Female, 58) “Bills were mounting. I had to go back.” (Male, 59) “Burned through savings, required personal loan to continue to pay rent, Centrelink [government agency] payments are totally inadequate therefore I had to return to work” (Male, 41) “My ability to support myself with savings ensured I was able to focus on my health and not return to work too early” (Male, 57) “Financial support from family enabled me to take it slowly” (Male, 51) “Fully paid by company with no pressure to return to work and didn't need outside financial assistance” (Male, 60) “Just wanting to get back to work; for things to return to normal as possible” (Male, 62) “TIME quite simply. It took a long time to regain the weight I lost and return to sufficient energy levels” (Female, 55) “Employer was very supportive allowing me to work less hours at full pay” (Female, 58) “Support from Peter Mac [hospital] staff and giving me objectives and incentives to return to work; they have been outstanding” (Male, 64) “For me it was getting my strength back so as to cope with daily routine, work and kids” (Male, 45) “Determination. Push through pain barriers” (Male, 52) “Being free of coughing and occasional gagging when swallowing. Not being tired” (Male, 65) “Understanding and having the knowledge of what I needed to do to rehabilitate. If I had this knowledge to begin with, my recovery would have been quicker” (Male, 65) “As I work in construction it was just being weak and fatigued” (Male, 51) “My mouth becomes dry and I develop ulcers when I lecture all day” (Female, 55) “I was not able to work physically until I gained strength back” (Male, 45) “Effect of the drugs I was on during chemotherapy and radiotherapy, plus my ongoing maintenance medicines” (Male, 60) “I feel unable or unwilling to return to [my] previous employment through age, weariness and understanding that life is short, and [I] should follow dreams of happiness. I am disillusioned with work as it was and want to follow other directions” (Male, 52) “It took time to recover from being tired. The treatment was intense and took time to complete” (Male, 53)