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A New Italian Questionnaire to Assess Caregivers of Cancer Patients' Satisfaction With Palliative Care: Multicenter Validation of the Post Mortem Questionnaire-Short Form
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Journal of Pain and Symptom Management
Vol. 47 No. 2 February 2014
Original Article
A New Italian Questionnaire to Assess Caregivers of Cancer Patients’ Satisfaction With Palliative Care: Multicenter Validation of the Post Mortem Questionnaire-Short Form Manuela Partinico, MSc, Alice Cora, MSc, Marta Ghisi, PhD, Allison J. Ouimet, MSc, and Marco Visentin, MD, on behalf of the QPM Group Psychology Unit (M.P., A.C.) and Pain Therapy and Palliative Care Unit (M.V.), San Bortolo Hospital, Vicenza; Department of General Psychology (M.G.), University of Padova, Padua, Italy; and Department of Psychology (A.J.O.), Concordia University, Montreal, Quebec, Canada
Abstract Context. Caregiver satisfaction with palliative care is a crucial indicator of its effectiveness. In light of the lack of validated or reliable Italian instruments, the Post Mortem Questionnaire-Short Form (QPM-SF), a self-report questionnaire, has been developed to assess home and inpatient hospice care. Objectives. The present study was designed to evaluate the psychometric properties of QPM-SF and assess for differences in quality of palliative care between hospice and home care settings. Methods. A total of 584 caregivers of terminal cancer patients completed QPMSF one month after the death of the care recipient. To assess test-retest reliability, a subgroup of 50 caregivers completed the questionnaire a second time, one month later. Results. QPM-SF showed good internal consistency and temporal stability and a four-factor structure: ‘‘Integrated home care,’’ ‘‘Hospice,’’ ‘‘Physical careInformation-Global evaluation,’’ and ‘‘Needs.’’ Conclusion. QPM-SF may be considered a valid, reliable, and well-accepted selfreport instrument for examining and implementing palliative care interventions. J Pain Symptom Manage 2014;47:298e306. Ó 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, satisfaction, cancer, terminal phase, end-of-life care
Introduction Address correspondence to: Manuela Partinico, MSc, Psychology Unit, San Bortolo Hospital, Viale Rodolfi 37, I-36100 Vicenza, Italy. E-mail: psic. [email protected] Accepted for publication: March 29, 2013. Ó 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
The terminal phase of cancer is a crucial period for both the dying person and their caregivers because it truly tests a health care service’s ability to provide comprehensive, compassionate, and coordinated care. As defined by the World Health Organization, 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2013.03.018
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‘‘palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.’’1p. 94 In response to increasing awareness of the needs of terminally ill cancer patients, medical institutions have begun to develop specialized palliative care programs, which typically include, according to El-Jawahri et al.,2p. 87 ‘‘a multidisciplinary team of clinicians specially trained in managing symptoms, enabling informed decision making by offering education about prognosis and the potential benefits and risks of treatments, as well as providing psychological, social, and spiritual support.’’ To develop and refine effective and efficacious palliative care teams, assessment of the clinical usefulness of current palliative care interventions is essential.3 A crucial aspect in the evaluation of palliative care is the assessment of patients’ and families’ reported satisfaction with care.4 Indeed, satisfaction with care likely integrates multiple aspects of both the patients’ and the caregivers’ experience of care.5 Qualitative research has demonstrated that patients and families attribute great importance to satisfaction.5 Although there is overlap between the domains/themes of palliative care satisfaction and those of general satisfaction, there are also elements that are relatively unique to this field. As such, outcome measures should assess constructs reflecting the specific goals of palliative care, such as improvement of patients’ quality of life and quality of death, symptom control, family support, and satisfaction.3,6 Dimensional analysis of the literature demonstrates that the unique consequences of palliative care are personhood and identity and quality of death rather than quality of life.7 Although the patient is the most appropriate source of information on his/her own condition, family caregivers are considered an alternative or complementary source of information. For example, they may play an important role when the patient is no longer able to complete a questionnaire or to communicate because of declining health. Indeed, in this situation, either the patient may refuse to
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complete the questionnaire or the multiprofessional team may be reluctant to request it. As such, an assessment tool designed to evaluate caregiver satisfaction may provide valuable information related to the benefits and limitations of extant palliative care services. Despite methodological limitations, research demonstrates that palliative care interventions improve patients’ quality of life, satisfaction with care, and end-of-life outcomes.2 Kane et al.8 were among the first to analyze satisfaction with care and found that both patients and caregivers reported higher satisfaction with palliative care compared with those receiving usual care. Subsequent research has demonstrated that palliative care and hospice teams improved satisfaction. However, the majority of studies did not assess satisfaction of outcome directly. Moreover, the type of service delivered by each team varied considerably.5,9e12 Although the evidence supports the capability of these interventions to improve important aspects of end-of-life care, future study designs need to account for the limitations described previously. Specifically, standardized outcome measures designed for end-of-life care satisfaction should be used.13,14 Moreover, given the variety of settings and procedures that provide palliative care services, the identification of ideal service delivery conditions is essential. Because of the inconsistency of results across the few studies that have compared different locations of palliative care delivery, generalizability of findings, particularly to service delivery in other countries, is limited.2,15 Importantly, there is a paucity of research on measurement tools assessing quality of care and families’ need.4,16 Few instruments have been developed or validated to assess clinical practice, evaluation studies, quality assessment, or improvement of interventions. Moreover, many commonly used instruments have not been specifically tested in end-of-life populations, where psychometrics, burden, or applicability may be very different. Studies that used general measures of satisfaction often resulted in ceiling effects within a palliative care setting.4 Furthermore, as reported by Teno, none of these measures emerged as a ‘‘gold standard.’’16 Finally, there are no validated or reliable instruments in the Italian language.16
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In the light of these considerations, we developed and validated the Post Mortem Questionnaire Short Form (QPM-SF) to assess family members’ satisfaction with palliative care. The present study was designed as a test of QPM-SF. As a secondary goal, we evaluated the quality of palliative care in hospice and home care settings in northeastern Italy.
Methods Participants and Data Collection Participants were 584 family caregivers, recruited consecutively from an initial pool of 873 caregivers (response rate ¼ 66.89%), whose care recipients were cancer patients admitted for palliative care at any of the 16 centers in northern Italy. The 16 centers were ten home care services and six hospices affiliated with nine hospitals and one charity institution. Caregivers were recruited for participation if the patient received at least two home visits or was admitted to a hospice for at least three days. In particular, 220 caregivers had a relative who had received home care services (37.7%), whereas 238 caregivers had a relative who had attended hospice (40.8%), and 126 caregivers had a relative who experienced both conditions (21.6%). All sociodemographic data are shown in Table 1. Patients in the home care condition received care for a longer period, F(1, 443) ¼ 57.10, P < 0.001; mean SD ¼ 81.28 110.49 days, than did patients in the hospice condition, 25.15 28.21 days. No differences emerged in patients’ mean age, F(1, 451) ¼ 0.017, P ¼ 0.896; 72.39 12.03. To assess test-retest reliability, a randomly selected subgroup of caregivers (n ¼ 50) completed
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the questionnaire one month after the first administration.
Procedure Caregiver participants were recruited during the terminal phase of the patients’ disease. One month after the care recipient’s death, QPM-SF and a letter describing the study were sent to the caregiver’s address. The study was conducted in accordance with the Declaration of Helsinki and approved by the institutional board of the participating institution (ULSS 6, Vicenza). All individuals provided their written consent before entering the study.
Test Construction QPM-SF was modified from the Post Mortem Questionnaire (QPM),17 a semi-structured interview designed to evaluate distinct dimensions of care received by both the patient and the family in home care settings (45 satisfaction items). The items of QPM encompass the main domains considered important in the palliative care literature,3,10 constructs assessed by existing instruments such as the FAMCARE scale,18 and expert opinions generated from multidisciplinary staff meetings (physicians, psychologists, nurses, and volunteers dedicated to home care). Ninety-one caregivers of cancer patients admitted to palliative home care completed the face-to-face interview one month after the patient’s death.17 The one month postmortem period was chosen because of its precedence within the palliative care literature, with particular reference to the FAMCARE scale,18 which is among the most used satisfaction measures in this context.19e21 Interviews were
Table 1 Differences in Demographic Data Between Home Care and Hospice Groups Caregiver Age Home Hospice Gender Home Hospice Kinship Home Hospice Employment Home Hospice
Mean SD 55.82 12.71 54.70 12.51 Male (%) 60 (27.3) 76 (32.2) Spouse (%) 89 (40.6) 81 (34.3) Employed (%) 100 (7.4) 119 (51.5)
Female (%) 160 (72.7) 162 (67.8) Son/daughter (%) 94 (42.9) 120 (50.8) Retired (%) 52 (26.4) 54 (23.4)
Brother/sister (%) 10 (4.6) 14 (5.9) Housewife (%) 53 (25.1) 57 (24.7)
Parent (%) 5 (2.3) 3 (1.3) Student (%) 6 (2.8) 1 (0.4)
Other (%) 21 (9.6) 18 (7.6)
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conducted in the caregiver’s home by previously trained administrators to improve compliance and reduce potential discomfort. QPM demonstrated good psychometric properties, with a total explained variance of 69% and good values of internal consistency (a > 0.80). Factor analysis identified four factors that reflect the key areas of home care: ‘‘Relational modality,’’ ‘‘Symptom control and needs,’’ ‘‘Assistance of family doctor,’’ and ‘‘Information.’’ We developed a self-report short form to improve some limitations of the original QPM. Specifically, the self-report nature of QPM-SF offers several advantages. Because of the reduced completion time, the burden of both the interviewers and respondents is minimized, thereby increasing the response rate. Moreover, certain response biases are decreased because there is more privacy for the respondents (particularly for sensitive issues). Social desirability and interviewer effects also are reduced. Finally, for all the above reasons, self-report is more cost-effective, thereby facilitating research across many contexts. QPM-SF was designed to examine the perspective of family members on the quality of end-of-life care and assess whether multidisciplinary treatment meets the needs of caregivers (37 satisfaction items). We also considered unique requirements of palliative care documented in current scientific literature: 1) providing the dying person with the desired level of physical and emotional comfort and with the best management of pain and other symptoms; 2) offering adequate information to family members to promote shared decision making when the patient is unable to communicate or to reliably report; 3) attending to the needs of family members, including both practical and emotional support for caregivers’ burden; and 4) ensuring accessibility and coordination of care between members of staff and different settings.5,7,22e24 A new important aspect of QPM-SF was the inclusion of two different sections specifically dedicated to home and inpatient hospice care, respectively. This addition was motivated by the necessity to assess the recent development of inpatient hospice care in Italy, and specifically, how it compares to home care. Across these two settings, QPM-SF comprises 37 satisfaction items about the care provided to the dying person
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and their family members by the palliative team. After providing basic and context-specific demographic information (demographic characteristics of caregiver and patient, setting and duration of palliative care, possible hospital admission during home care), respondents are asked to rate the quality of palliative care using a 5-point Likert-type scale ranging from 1 (very much dissatisfied) to 5 (very much satisfied). Items are divided into the following six sections: 1) quality of medical care (efficacy, readiness, continuity of treatment of pain, and other symptoms); 2) qualitative and quantitative aspects of communication related to pharmacological treatment and illness course (e.g., ‘‘Do you believe that the way in which information was provided was adequate?’’); 3) type and quality of professional services used (e.g., psychological care, social assistance, volunteer assistance); 4) quality of care delivered by home care health professionals; 5) quality of care delivered by inpatient hospice health professionals; and 6) unmet organizational (coordination between professionals), psychological (psychological support to the patient and family members), and social (bureaucratic problems, social help for caregiver’s burden) needs. Finally, overall satisfaction is measured with a single item on a 5-point scale (‘‘not at all,’’ ‘‘little,’’ ‘‘enough,’’ ‘‘very,’’ ‘‘very much’’ satisfied). Other important modifications from the original QPM include the addition of items assessing the setting and duration of care and satisfaction for the figure of the welfare worker. For items related to physical care, we have added some examples of ‘‘other symptoms,’’ such as nausea, constipation, and decreased appetite, to increase respondents’ understanding. We deleted items within the information domain, which asked caregivers to assess patients’ satisfaction with quantity/quality of information communication because of the complete overlap of responses and the unreliability of such an evaluation by a family member. Moreover, home care (and, therefore, hospice) items about psychological support perceived by medical and nursing staff and duration of medical visits were deleted because they did not load significantly on any factor of QPM.
Statistical Analyses An exploratory factor analysis, using the principal axis factoring method, followed by
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Table 2 Exploratory Factor Analysis of QPM-SF: Items, Factors, and Factor Loadings Factors and Items
Factor Loadings
Factor 1: Integrated home care Benefit of palliative care services’ utilization vs. conventional care Availability of palliative care medical and nursing staff to keep family informed Availability of family doctor to keep family informed Willingness to listen by palliative care medical and nursing staff Willingness to listen by family doctor Availability of palliative care medical and nursing staff in case of need Availability of family doctor in case of need Frequency of home visits of palliative care medical and nursing staff Frequency of home visits of family doctor Factor 2: Hospice Availability of hospice medical staff to keep family informed Availability of hospice nurses and health care assistants to keep family informed Willingness to listen by hospice medical staff Willingness to listen by hospice nurses and health care assistants Availability of hospice medical staff in case of need Availability of hospice nurses and health care assistants in case of need Factor 3: Physical care-Information-Global evaluation Degree of treatment’s effectiveness on pain Degree of treatment’s effectiveness on other symptoms Promptness in responding to pain Promptness in responding to other symptoms Continuity in following the pain Continuity in following other symptoms Adequacy of the amount of information received by caregiver about pharmacological treatment Adequacy of the amount of information received by caregiver about the course of the disease Adequacy of the way to inform caregiver Overall satisfaction Factor 4: Needs Need of better coordination of the team Need of psychological support for patient Need of psychological support for family members Need of help for bureaucratic problems Need of increased family involvement in decisions about care Need of social support or to be replaced in case of high burden of care
0.44 0.88 0.98 0.88 0.99 0.88 0.99 0.85 0.96 0.98 0.96 0.98 0.95 0.99 0.95 0.77 0.78 0.79 0.81 0.80 0.82 0.55 0.63 0.55 0.55 0.63 0.80 0.77 0.67 0.70 0.73
QPM-SF ¼ Post Mortem Questionnaire-Short Form.
PROMAX rotation with Kaiser normalization, was performed to derive the factor structure of the questionnaire. Internal consistency was evaluated using Cronbach’s alpha, whereas intraclass correlation coefficients were calculated to assess test-retest reliability. Potential differences between groups in sociodemographic variables were assessed using Chi-squared tests and univariate analyses of variance. To assess potential between-group differences in mean scores of QPM-SF, analyses of variance and analyses of covariance were performed using length of care as the covariate. All analyses were conducted using SPSS software version 17.0 for Windows (SPSS, Inc., Chicago, IL).
F(1, 452) ¼ 0.89; P ¼ 0. 35, gender distribution, c2(1) ¼ 1.74; P ¼ 0.25, kinship typology, c2(4) ¼ 4.30; P ¼ 0.37, or employment profile, c2(3) ¼ 4.51; P ¼ 0.21 (Table 1).
Exploratory Factor Analysis Extraction procedures suggested four factors accounting for 63.25% of the total variance. The first factor (Integrated home care) accounted for 30.22% of the variance; the second factor (Hospice) accounted for 16.32%; the third factor (Physical careInformation-Global evaluation) accounted for 9.13%; and the fourth factor (Needs) accounted for 7.58%. Table 2 shows factor loadings, and Table 3 shows QPM-SF subscale means/SDs.
Results Sample Characteristics
Internal Consistency
No significant differences emerged between groups (home vs. hospice care) in mean age,
Internal consistency was very high for the first and second factors of QPM-SF: ‘‘Integrated
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home care’’ subscale (a ¼ 0.97) and ‘‘Hospice’’ subscale (a ¼ 0.99). Internal consistency for the third and fourth factors of QPM-SF was adequate: ‘‘Physical care-Information-Global evaluation’’ subscale (a ¼ 0.90) and ‘‘Needs’’ subscale (a ¼ 0.85).
Test-Retest Reliability Temporal stability of the four scales of QPMSF was excellent for the ‘‘Integrated home care’’ and ‘‘Hospice’’ subscales and moderate for the other two scales. All values (a) are presented in Table 4.
Home Care vs. Hospice Care No significant differences emerged between caregivers whose relative received home care and those whose relative received hospice care in mean scores on the ‘‘Physical careInformation-Global evaluation’’ subscale, F(1, 374) ¼ 2.07; P ¼ 0.15 or the ‘‘Needs’’ subscale, F(1, 360) ¼ 1.57; P ¼ 0.21. Moreover, length of care was not a significant covariate for either subscales, F(1, 374) ¼ 0.57; P ¼ 0.45 and F(1, 360) ¼ 0.88; P ¼ 0.35, respectively. Finally, caregivers of patients in the hospice setting reported higher levels of general satisfaction, mean SD ¼ 4.43 0.69; F(1, 455) ¼ 10.39, P ¼ 0.001, compared with caregivers of patients in the home care setting, mean SD ¼ 4.20 1.06. Moreover, the home care group rated palliative care as more advantageous in comparison with conventional treatment, mean SD ¼ 4.25 1.18, than did the hospice group, mean SD ¼ 2.87 2.19; F(1, 456) ¼ 68.62, P < 0.001. Overall, 88% of caregivers reported that they were ‘‘very’’ or ‘‘very much satisfied’’ with the service provided. Specifically, 92% of hospice caregivers, 83% of home care providers, and 88% of care providers who experienced both conditions expressed high levels of satisfaction.
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Discussion Understanding the key aspects of palliative care through family satisfaction is essential to assess and improve specialized care programs.3,4,6 An important obstacle to the improvement of the quality of health care to terminal patients is the lack of appropriate measurement tools. Despite recent research in the field, no instruments have emerged as a ‘‘gold standard.’’5,16 To attempt to fill that void, we developed a new questionnaire, QPM-SF, which captures palliative care satisfaction. Our goals were to evaluate the psychometric properties of this self-report questionnaire, and additionally, analyze potential differences in quality of palliative care between hospice and home care settings. Results demonstrated that QPM-SF has good psychometric properties. A four-factor solution proved to be the most adequate for our sample: the four factors extracted were Integrated home care, Hospice, Physical care-InformationGlobal evaluation, and Needs, all of which demonstrated very good internal consistency. Temporal stability was assessed within a subgroup of 50 participants who completed the questionnaire a second time after a one month period. Test-retest coefficients were very strong for the Integrated home care and Hospice subscales, whereas they were sufficient to moderate for the Physical care-Information-Global evaluation and Needs subscales. Because the Physical careInformation-Global evaluation subscale assesses more technical and idiosyncratic issues (e.g., degree of treatment’s effectiveness on pain and other symptoms, adequacy of the amount of information received) than other factors, these items may be less stable over time. Moreover, because individuals may experience and adapt to the grieving process in a variety of ways over time (e.g., increased recovery, depression, or anger), the expression of current needs on the fourth subscale may be different at Time 2,
Table 3 Means and SDs for QPM-SF Subscales Scales
Mean SD Total Sample
Integrated home care Hospice Physical care-Information-Global evaluation Needs
37.43 25.95 41.50 11.33
QPM-SF ¼ Post Mortem Questionnaire-Short Form.
5.96 3.70 6.66 4.97
Mean SD Hospice Group
41.91 6.35 10.90 4.57
Mean SD Home care Group
Possible Score Range
41.04 6.97 11.80 5.34
9e45 6e30 10e50 6e30
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Table 4 Temporal Stability of the Four Subscales of QPM-SF Scales Integrated home care Hospice Physical care-Information-Global evaluation Needs
Intraclass Correlation Coefficient 0.98 0.97 0.70 0.66
QPM-SF ¼ Post Mortem Questionnaire-Short Form.
compared with Time 1. In addition, we hypothesize that the formulation of some items on the Needs subscale may have been interpreted in one of the two ways, thereby influencing testretest reliability. Specifically, it may not have been clear whether respondents were asked to evaluate their actual needs during the relative’s illness or whether they were asked to indicate if they had complained about needs going unmet. Given this ambiguity, participants may have responded differently to certain items at each administration of QPM-SF. Overall, consistent with previous findings, caregivers indicated that they perceived palliative care interventions to be more effective than standard care. Indeed, although few studies have included satisfaction as an outcome and used well-validated tools, recent studies and systematic reviews have found that palliative care and hospice teams improve satisfaction.2,5,12,25 Moreover, although patients in the home care condition received care for a longer period than did those in the hospice condition, level of satisfaction was not moderated by duration of care. There were no differences between hospice and home care conditions on QPM-SF Physical care-Information-Global evaluation or Needs subscales. These data extend the limited literature regarding effectiveness in different settings. The results of our study are consistent with Higginson and Evans,15 which demonstrated that home, hospital, and inpatient specialist palliative care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, and reduced hospital admissions, with no differences between these different models. Conversely, these outcomes are in contrast with the review by Higginson et al., which suggested greater effectiveness for home palliative care interventions.11 To better understand the discrepant findings, we examined salient questionnaire
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items related to general satisfaction and palliative vs. standard care comparisons. Specifically, caregivers of patients in the hospice setting showed higher levels of general satisfaction compared with the home care group. This result may be attributable to the unique characteristics of inpatient hospice care, which offers 24 hour nursing care, access to immediate medication (for pain, nausea, etc.), and greater access to counseling services for both the patient and family members. Moreover, hospice nurses are available for continuous help in daily tasks (e.g., hygiene, transportation), which reduces the caregiver’s burden and facilitates adjustment to the bereavement process. Indeed, as reported by Skilbeck et al.,26 inpatient care can provide respite from ongoing caregiving responsibilities for family members. Additionally, some disadvantages of home care include difficulties related to staff continuity, communication, and economic/emotional burden.26,27 However, the home care caregivers evaluated palliative care as more advantageous compared with conventional care than did hospice caregivers. This finding may be attributed to next-of-kin experiences as described by Milberg and Strang.27 Their research demonstrated that the opportunity for patients to remain in the home, which feels more natural, facilitates visits by friends and family, and provides familiar surroundings, is a central positive aspect of home care. We believe that our study contributes to a better understanding of the elements of palliative care that are important for patients and families and provides important findings regarding the relationships between quality of care and satisfaction. Moreover, QPM-SF should be considered a useful and well-accepted instrument for evaluating these constructs. Indeed, a high percentage of caregivers completed and returned the questionnaire, and respondents offered several positive comments about the experience. It is important to note, however, that the evaluation of quality of care is influenced by the family’s general appraisals of their psychological experiences with the patient’s death.24 Furthermore, present results were based on a geographically restricted sample. These data should be replicated within other, more diverse samples. However, the patients and family caregivers within our sample reported
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demographic characteristics (e.g., prevalence of female caregivers, kinship of spouse or daughter) consistent with those described in other end-of-life studies.22,28 In conclusion, the routine use of a self-report questionnaire such as QPM-SF is essential for evaluating and implementing end-of-life interventions with the fundamental aim of improving the experiences of dying patients and their family caregivers.
Disclosures and Acknowledgments No funds were received in support of this study. None of the authors declare any conflicts of interest. The authors are grateful to Francesco Boz for assistance with the data analysis. Members of the QPM Group: Luciano Barbazza, RN, Domiciliary Palliative Care Service ‘‘Alberto Rizzotti’’ and Hospice ‘‘Casa dei Gelsi’’Charitable Institution ‘‘Advar’’ Onlus, Treviso; Cosimo De Chirico, MD, Domiciliary Palliative Care Service, Local Health Center n. 7, Pieve di Soligo; Giuseppe Fornasier, MD, Pain Therapy and Palliative Care Unit, Local Health Service n. 1, Belluno; Milena Guglielminetti, MSc, Palliative Care Service, Hospice ‘‘Le vette,’’ Local Health Service n. 2, Feltre; Elisabetta Leonardi, MSc, Domiciliary Palliative Care Service, Local Health Center n. 15, Alta Padovana; Franca Maina, RN, Charitable Institution for Domiciliary Oncological Assistance Onlus (ADO), Verona; Agostino Mascanzoni, MD, Hospice ‘‘Casa tua 2,’’ Local Health Service n. 1, Belluno; Giuseppe Micheletto, MD, Domiciliary Palliative Care Service, Local Health Service n. 13, Mirano-Dolo; Rosanna Primavera, MSc, Hospice ‘‘Il Melograno,’’ Local Health Center n. 15, Alta Padovana, Camposampiero; Gianvito Romanelli, MD, Hospice ‘‘San Giuseppe,’’ Local Health Center n. 20, Verona, Marzana; Luca Ottolini Luca, MD, Domiciliary Palliative Care Service and Hospice, U.O.A.P. North-Center Health District, Trento; and Modesto Zago, MD, Hospice ‘‘Centro cura e sollievo Paolo VI,’’ Local Health Center n. 16, Padova, Italy.
References 1. Sep ulveda C, Marlin A, Yoshida T, Ullrich A. Palliative care: the World Health Organization’s global
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perspective. J Pain Symptom Manage 2002;24: 91e96. 2. El-Jawahri A, Greer JA, Temel JS. Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol 2011;9:87e93. 3. Hearn J, Higginson IJ. Outcome measures in palliative care for advanced cancer patients: a review. J Public Health Med 1997;19:193e199. 4. Lorenz K, Lynn J, Morton SC, et al. End-of-life care and outcomes. Summary, evidence report/ technology assessment: number 110 (AHRQ Publication No. 05-E004-1). 2004. Available from http://www.ahrq.gov/clinic/epcsums/eolsum.htm. Accessed July 23, 2010. 5. Dy SM, Shugarman LR, Lorenz KA, Mularski RA, Lynn J, RAND-Southern California Evidence-Based Practice Center. A systematic review of satisfaction with care at the end of life. J Am Geriatr Soc 2008;56:124e129. 6. Kaasa S, Loge JH. Quality of life in palliative care: principles and practice. Palliat Med 2003;17: 11e20. 7. Trotta RL. Quality of death: a dimensional analysis of palliative care in the nursing home. J Palliat Med 2007;10:1116e1127. 8. Kane RL, Wales J, Bernstein L, Leibowitz A, Kaplan S. A randomised controlled trial of hospice care. Lancet 1984;1:890e894. 9. Hearn J, Higginson IJ. Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliat Med 1998;12: 317e332. 10. Wilkinson EK, Salisbury C, Bosanquet N, et al. Patient and carer preference for, and satisfaction with, specialist models of palliative care: a systematic literature review. Palliat Med 1999;13:197e216. 11. Higginson IJ, Finlay IG, Goodwin DM, et al. Is there evidence that palliative care teams alter endof-life experiences of patients and their caregivers? J Pain Symptom Manage 2003;25:150e168. 12. Zimmermann C, Riechelmann R, Krzyzanowska M, Rodin G, Tannock I. Effectiveness of specialized palliative care: a systematic review. JAMA 2008;299:1698e1709. 13. Higginson IJ, Finlay I, Goodwin DM, et al. Do hospital-based palliative teams improve care for patients or families at the end of life? J Pain Symptom Manage 2002;23:96e106. 14. Lorenz KA, Lynn J, Dy SM, et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med 2008;148:147e159. 15. Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J 2010;16: 423e435.
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16. Teno JM. TIME: toolkit of instruments to measure end-of-life care. 2004. Available from http:// www.chcr.brown.edu/pcoc/toolkit.htm. Accessed December 6, 2011. 17. Partinico M, Cora A, Ferrari R, Visentin M, Zanolin ME. Il QPM: uno strumento per la rilevazione della soddisfazione del caregiver [in Italian]. La Rivista Italiana di Cure Palliative 2008;3:8e23. 18. Kristjanson LJ. Validity and reliability testing of the FAMCARE scale: measuring family satisfaction with advanced cancer care. Soc Sci Med 1993;36: 693e701. 19. Follwell M, Burman D, Le LW, et al. Phase II Study of an outpatient palliative care intervention in patients with metastatic cancer. J Clin Oncol 2009;27:206e213. 20. Kristjanson LJ, Leis A, Koop PM, Carriere KC, Mueller B. Family members’ care expectations, care perceptions, and satisfaction with advanced cancer care: results of a multi-site pilot study. J Palliat Care 1997;13:5e13. 21. Ringdal GI, Jordhoy MS, Kaasa S. Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. J Pain Symptom Manage 2002;24:53e63. 22. Teno JM, Clarridge B, Casey V, EdgmanLevitan S, Fowler J. Validation of toolkit after-
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death bereaved family member interview. J Pain Symptom Manage 2001;22:752e758. 23. Bausewein C, Daveson B, Benalia H, Simon ST, Higginson I. Outcome measurement in palliative caredThe essentials. London: Prisma Publications, 2011. 24. Stajduhar KI, Funk L, Cohen SR, et al. Bereaved family members’ assessments of the quality of endof-life care: what is important? J Palliat Care 2011; 27:261e269. 25. Wiese CH, Morgenthal HC, Bartels UE, et al. Post-mortem bereavement of family caregivers in Germany: a prospective interview-based investigation. Wien Klin Wochenschr 2010;122:384e389. 26. Skilbeck JK, Payne SA, Ingleton MC, et al. An exploration of family carers’s experience of respite services in one specialist palliative care unit. Palliat Med 2005;19:610e618. 27. Milberg A, Strang P. Met and unmet needs in hospital-based home care: qualitative evaluation through open-ended questions. Palliat Med 2000; 14:533e534. 28. Fakhoury WK, McCarthy M, Addington-Hall J. The effects of the clinical characteristics of dying cancer patients on informal caregivers’ satisfaction with palliative care. Palliat Med 1997;11:107e115.
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Original Article
A New Italian Questionnaire to Assess Caregivers of Cancer Patients’ Satisfaction With Palliative Care: Multicenter Validation of the Post Mortem Questionnaire-Short Form Manuela Partinico, MSc, Alice Cora, MSc, Marta Ghisi, PhD, Allison J. Ouimet, MSc, and Marco Visentin, MD, on behalf of the QPM Group Psychology Unit (M.P., A.C.) and Pain Therapy and Palliative Care Unit (M.V.), San Bortolo Hospital, Vicenza; Department of General Psychology (M.G.), University of Padova, Padua, Italy; and Department of Psychology (A.J.O.), Concordia University, Montreal, Quebec, Canada
Abstract Context. Caregiver satisfaction with palliative care is a crucial indicator of its effectiveness. In light of the lack of validated or reliable Italian instruments, the Post Mortem Questionnaire-Short Form (QPM-SF), a self-report questionnaire, has been developed to assess home and inpatient hospice care. Objectives. The present study was designed to evaluate the psychometric properties of QPM-SF and assess for differences in quality of palliative care between hospice and home care settings. Methods. A total of 584 caregivers of terminal cancer patients completed QPMSF one month after the death of the care recipient. To assess test-retest reliability, a subgroup of 50 caregivers completed the questionnaire a second time, one month later. Results. QPM-SF showed good internal consistency and temporal stability and a four-factor structure: ‘‘Integrated home care,’’ ‘‘Hospice,’’ ‘‘Physical careInformation-Global evaluation,’’ and ‘‘Needs.’’ Conclusion. QPM-SF may be considered a valid, reliable, and well-accepted selfreport instrument for examining and implementing palliative care interventions. J Pain Symptom Manage 2014;47:298e306. Ó 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, satisfaction, cancer, terminal phase, end-of-life care
Introduction Address correspondence to: Manuela Partinico, MSc, Psychology Unit, San Bortolo Hospital, Viale Rodolfi 37, I-36100 Vicenza, Italy. E-mail: psic. [email protected] Accepted for publication: March 29, 2013. Ó 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
The terminal phase of cancer is a crucial period for both the dying person and their caregivers because it truly tests a health care service’s ability to provide comprehensive, compassionate, and coordinated care. As defined by the World Health Organization, 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2013.03.018
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‘‘palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.’’1p. 94 In response to increasing awareness of the needs of terminally ill cancer patients, medical institutions have begun to develop specialized palliative care programs, which typically include, according to El-Jawahri et al.,2p. 87 ‘‘a multidisciplinary team of clinicians specially trained in managing symptoms, enabling informed decision making by offering education about prognosis and the potential benefits and risks of treatments, as well as providing psychological, social, and spiritual support.’’ To develop and refine effective and efficacious palliative care teams, assessment of the clinical usefulness of current palliative care interventions is essential.3 A crucial aspect in the evaluation of palliative care is the assessment of patients’ and families’ reported satisfaction with care.4 Indeed, satisfaction with care likely integrates multiple aspects of both the patients’ and the caregivers’ experience of care.5 Qualitative research has demonstrated that patients and families attribute great importance to satisfaction.5 Although there is overlap between the domains/themes of palliative care satisfaction and those of general satisfaction, there are also elements that are relatively unique to this field. As such, outcome measures should assess constructs reflecting the specific goals of palliative care, such as improvement of patients’ quality of life and quality of death, symptom control, family support, and satisfaction.3,6 Dimensional analysis of the literature demonstrates that the unique consequences of palliative care are personhood and identity and quality of death rather than quality of life.7 Although the patient is the most appropriate source of information on his/her own condition, family caregivers are considered an alternative or complementary source of information. For example, they may play an important role when the patient is no longer able to complete a questionnaire or to communicate because of declining health. Indeed, in this situation, either the patient may refuse to
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complete the questionnaire or the multiprofessional team may be reluctant to request it. As such, an assessment tool designed to evaluate caregiver satisfaction may provide valuable information related to the benefits and limitations of extant palliative care services. Despite methodological limitations, research demonstrates that palliative care interventions improve patients’ quality of life, satisfaction with care, and end-of-life outcomes.2 Kane et al.8 were among the first to analyze satisfaction with care and found that both patients and caregivers reported higher satisfaction with palliative care compared with those receiving usual care. Subsequent research has demonstrated that palliative care and hospice teams improved satisfaction. However, the majority of studies did not assess satisfaction of outcome directly. Moreover, the type of service delivered by each team varied considerably.5,9e12 Although the evidence supports the capability of these interventions to improve important aspects of end-of-life care, future study designs need to account for the limitations described previously. Specifically, standardized outcome measures designed for end-of-life care satisfaction should be used.13,14 Moreover, given the variety of settings and procedures that provide palliative care services, the identification of ideal service delivery conditions is essential. Because of the inconsistency of results across the few studies that have compared different locations of palliative care delivery, generalizability of findings, particularly to service delivery in other countries, is limited.2,15 Importantly, there is a paucity of research on measurement tools assessing quality of care and families’ need.4,16 Few instruments have been developed or validated to assess clinical practice, evaluation studies, quality assessment, or improvement of interventions. Moreover, many commonly used instruments have not been specifically tested in end-of-life populations, where psychometrics, burden, or applicability may be very different. Studies that used general measures of satisfaction often resulted in ceiling effects within a palliative care setting.4 Furthermore, as reported by Teno, none of these measures emerged as a ‘‘gold standard.’’16 Finally, there are no validated or reliable instruments in the Italian language.16
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In the light of these considerations, we developed and validated the Post Mortem Questionnaire Short Form (QPM-SF) to assess family members’ satisfaction with palliative care. The present study was designed as a test of QPM-SF. As a secondary goal, we evaluated the quality of palliative care in hospice and home care settings in northeastern Italy.
Methods Participants and Data Collection Participants were 584 family caregivers, recruited consecutively from an initial pool of 873 caregivers (response rate ¼ 66.89%), whose care recipients were cancer patients admitted for palliative care at any of the 16 centers in northern Italy. The 16 centers were ten home care services and six hospices affiliated with nine hospitals and one charity institution. Caregivers were recruited for participation if the patient received at least two home visits or was admitted to a hospice for at least three days. In particular, 220 caregivers had a relative who had received home care services (37.7%), whereas 238 caregivers had a relative who had attended hospice (40.8%), and 126 caregivers had a relative who experienced both conditions (21.6%). All sociodemographic data are shown in Table 1. Patients in the home care condition received care for a longer period, F(1, 443) ¼ 57.10, P < 0.001; mean SD ¼ 81.28 110.49 days, than did patients in the hospice condition, 25.15 28.21 days. No differences emerged in patients’ mean age, F(1, 451) ¼ 0.017, P ¼ 0.896; 72.39 12.03. To assess test-retest reliability, a randomly selected subgroup of caregivers (n ¼ 50) completed
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the questionnaire one month after the first administration.
Procedure Caregiver participants were recruited during the terminal phase of the patients’ disease. One month after the care recipient’s death, QPM-SF and a letter describing the study were sent to the caregiver’s address. The study was conducted in accordance with the Declaration of Helsinki and approved by the institutional board of the participating institution (ULSS 6, Vicenza). All individuals provided their written consent before entering the study.
Test Construction QPM-SF was modified from the Post Mortem Questionnaire (QPM),17 a semi-structured interview designed to evaluate distinct dimensions of care received by both the patient and the family in home care settings (45 satisfaction items). The items of QPM encompass the main domains considered important in the palliative care literature,3,10 constructs assessed by existing instruments such as the FAMCARE scale,18 and expert opinions generated from multidisciplinary staff meetings (physicians, psychologists, nurses, and volunteers dedicated to home care). Ninety-one caregivers of cancer patients admitted to palliative home care completed the face-to-face interview one month after the patient’s death.17 The one month postmortem period was chosen because of its precedence within the palliative care literature, with particular reference to the FAMCARE scale,18 which is among the most used satisfaction measures in this context.19e21 Interviews were
Table 1 Differences in Demographic Data Between Home Care and Hospice Groups Caregiver Age Home Hospice Gender Home Hospice Kinship Home Hospice Employment Home Hospice
Mean SD 55.82 12.71 54.70 12.51 Male (%) 60 (27.3) 76 (32.2) Spouse (%) 89 (40.6) 81 (34.3) Employed (%) 100 (7.4) 119 (51.5)
Female (%) 160 (72.7) 162 (67.8) Son/daughter (%) 94 (42.9) 120 (50.8) Retired (%) 52 (26.4) 54 (23.4)
Brother/sister (%) 10 (4.6) 14 (5.9) Housewife (%) 53 (25.1) 57 (24.7)
Parent (%) 5 (2.3) 3 (1.3) Student (%) 6 (2.8) 1 (0.4)
Other (%) 21 (9.6) 18 (7.6)
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conducted in the caregiver’s home by previously trained administrators to improve compliance and reduce potential discomfort. QPM demonstrated good psychometric properties, with a total explained variance of 69% and good values of internal consistency (a > 0.80). Factor analysis identified four factors that reflect the key areas of home care: ‘‘Relational modality,’’ ‘‘Symptom control and needs,’’ ‘‘Assistance of family doctor,’’ and ‘‘Information.’’ We developed a self-report short form to improve some limitations of the original QPM. Specifically, the self-report nature of QPM-SF offers several advantages. Because of the reduced completion time, the burden of both the interviewers and respondents is minimized, thereby increasing the response rate. Moreover, certain response biases are decreased because there is more privacy for the respondents (particularly for sensitive issues). Social desirability and interviewer effects also are reduced. Finally, for all the above reasons, self-report is more cost-effective, thereby facilitating research across many contexts. QPM-SF was designed to examine the perspective of family members on the quality of end-of-life care and assess whether multidisciplinary treatment meets the needs of caregivers (37 satisfaction items). We also considered unique requirements of palliative care documented in current scientific literature: 1) providing the dying person with the desired level of physical and emotional comfort and with the best management of pain and other symptoms; 2) offering adequate information to family members to promote shared decision making when the patient is unable to communicate or to reliably report; 3) attending to the needs of family members, including both practical and emotional support for caregivers’ burden; and 4) ensuring accessibility and coordination of care between members of staff and different settings.5,7,22e24 A new important aspect of QPM-SF was the inclusion of two different sections specifically dedicated to home and inpatient hospice care, respectively. This addition was motivated by the necessity to assess the recent development of inpatient hospice care in Italy, and specifically, how it compares to home care. Across these two settings, QPM-SF comprises 37 satisfaction items about the care provided to the dying person
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and their family members by the palliative team. After providing basic and context-specific demographic information (demographic characteristics of caregiver and patient, setting and duration of palliative care, possible hospital admission during home care), respondents are asked to rate the quality of palliative care using a 5-point Likert-type scale ranging from 1 (very much dissatisfied) to 5 (very much satisfied). Items are divided into the following six sections: 1) quality of medical care (efficacy, readiness, continuity of treatment of pain, and other symptoms); 2) qualitative and quantitative aspects of communication related to pharmacological treatment and illness course (e.g., ‘‘Do you believe that the way in which information was provided was adequate?’’); 3) type and quality of professional services used (e.g., psychological care, social assistance, volunteer assistance); 4) quality of care delivered by home care health professionals; 5) quality of care delivered by inpatient hospice health professionals; and 6) unmet organizational (coordination between professionals), psychological (psychological support to the patient and family members), and social (bureaucratic problems, social help for caregiver’s burden) needs. Finally, overall satisfaction is measured with a single item on a 5-point scale (‘‘not at all,’’ ‘‘little,’’ ‘‘enough,’’ ‘‘very,’’ ‘‘very much’’ satisfied). Other important modifications from the original QPM include the addition of items assessing the setting and duration of care and satisfaction for the figure of the welfare worker. For items related to physical care, we have added some examples of ‘‘other symptoms,’’ such as nausea, constipation, and decreased appetite, to increase respondents’ understanding. We deleted items within the information domain, which asked caregivers to assess patients’ satisfaction with quantity/quality of information communication because of the complete overlap of responses and the unreliability of such an evaluation by a family member. Moreover, home care (and, therefore, hospice) items about psychological support perceived by medical and nursing staff and duration of medical visits were deleted because they did not load significantly on any factor of QPM.
Statistical Analyses An exploratory factor analysis, using the principal axis factoring method, followed by
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Table 2 Exploratory Factor Analysis of QPM-SF: Items, Factors, and Factor Loadings Factors and Items
Factor Loadings
Factor 1: Integrated home care Benefit of palliative care services’ utilization vs. conventional care Availability of palliative care medical and nursing staff to keep family informed Availability of family doctor to keep family informed Willingness to listen by palliative care medical and nursing staff Willingness to listen by family doctor Availability of palliative care medical and nursing staff in case of need Availability of family doctor in case of need Frequency of home visits of palliative care medical and nursing staff Frequency of home visits of family doctor Factor 2: Hospice Availability of hospice medical staff to keep family informed Availability of hospice nurses and health care assistants to keep family informed Willingness to listen by hospice medical staff Willingness to listen by hospice nurses and health care assistants Availability of hospice medical staff in case of need Availability of hospice nurses and health care assistants in case of need Factor 3: Physical care-Information-Global evaluation Degree of treatment’s effectiveness on pain Degree of treatment’s effectiveness on other symptoms Promptness in responding to pain Promptness in responding to other symptoms Continuity in following the pain Continuity in following other symptoms Adequacy of the amount of information received by caregiver about pharmacological treatment Adequacy of the amount of information received by caregiver about the course of the disease Adequacy of the way to inform caregiver Overall satisfaction Factor 4: Needs Need of better coordination of the team Need of psychological support for patient Need of psychological support for family members Need of help for bureaucratic problems Need of increased family involvement in decisions about care Need of social support or to be replaced in case of high burden of care
0.44 0.88 0.98 0.88 0.99 0.88 0.99 0.85 0.96 0.98 0.96 0.98 0.95 0.99 0.95 0.77 0.78 0.79 0.81 0.80 0.82 0.55 0.63 0.55 0.55 0.63 0.80 0.77 0.67 0.70 0.73
QPM-SF ¼ Post Mortem Questionnaire-Short Form.
PROMAX rotation with Kaiser normalization, was performed to derive the factor structure of the questionnaire. Internal consistency was evaluated using Cronbach’s alpha, whereas intraclass correlation coefficients were calculated to assess test-retest reliability. Potential differences between groups in sociodemographic variables were assessed using Chi-squared tests and univariate analyses of variance. To assess potential between-group differences in mean scores of QPM-SF, analyses of variance and analyses of covariance were performed using length of care as the covariate. All analyses were conducted using SPSS software version 17.0 for Windows (SPSS, Inc., Chicago, IL).
F(1, 452) ¼ 0.89; P ¼ 0. 35, gender distribution, c2(1) ¼ 1.74; P ¼ 0.25, kinship typology, c2(4) ¼ 4.30; P ¼ 0.37, or employment profile, c2(3) ¼ 4.51; P ¼ 0.21 (Table 1).
Exploratory Factor Analysis Extraction procedures suggested four factors accounting for 63.25% of the total variance. The first factor (Integrated home care) accounted for 30.22% of the variance; the second factor (Hospice) accounted for 16.32%; the third factor (Physical careInformation-Global evaluation) accounted for 9.13%; and the fourth factor (Needs) accounted for 7.58%. Table 2 shows factor loadings, and Table 3 shows QPM-SF subscale means/SDs.
Results Sample Characteristics
Internal Consistency
No significant differences emerged between groups (home vs. hospice care) in mean age,
Internal consistency was very high for the first and second factors of QPM-SF: ‘‘Integrated
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home care’’ subscale (a ¼ 0.97) and ‘‘Hospice’’ subscale (a ¼ 0.99). Internal consistency for the third and fourth factors of QPM-SF was adequate: ‘‘Physical care-Information-Global evaluation’’ subscale (a ¼ 0.90) and ‘‘Needs’’ subscale (a ¼ 0.85).
Test-Retest Reliability Temporal stability of the four scales of QPMSF was excellent for the ‘‘Integrated home care’’ and ‘‘Hospice’’ subscales and moderate for the other two scales. All values (a) are presented in Table 4.
Home Care vs. Hospice Care No significant differences emerged between caregivers whose relative received home care and those whose relative received hospice care in mean scores on the ‘‘Physical careInformation-Global evaluation’’ subscale, F(1, 374) ¼ 2.07; P ¼ 0.15 or the ‘‘Needs’’ subscale, F(1, 360) ¼ 1.57; P ¼ 0.21. Moreover, length of care was not a significant covariate for either subscales, F(1, 374) ¼ 0.57; P ¼ 0.45 and F(1, 360) ¼ 0.88; P ¼ 0.35, respectively. Finally, caregivers of patients in the hospice setting reported higher levels of general satisfaction, mean SD ¼ 4.43 0.69; F(1, 455) ¼ 10.39, P ¼ 0.001, compared with caregivers of patients in the home care setting, mean SD ¼ 4.20 1.06. Moreover, the home care group rated palliative care as more advantageous in comparison with conventional treatment, mean SD ¼ 4.25 1.18, than did the hospice group, mean SD ¼ 2.87 2.19; F(1, 456) ¼ 68.62, P < 0.001. Overall, 88% of caregivers reported that they were ‘‘very’’ or ‘‘very much satisfied’’ with the service provided. Specifically, 92% of hospice caregivers, 83% of home care providers, and 88% of care providers who experienced both conditions expressed high levels of satisfaction.
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Discussion Understanding the key aspects of palliative care through family satisfaction is essential to assess and improve specialized care programs.3,4,6 An important obstacle to the improvement of the quality of health care to terminal patients is the lack of appropriate measurement tools. Despite recent research in the field, no instruments have emerged as a ‘‘gold standard.’’5,16 To attempt to fill that void, we developed a new questionnaire, QPM-SF, which captures palliative care satisfaction. Our goals were to evaluate the psychometric properties of this self-report questionnaire, and additionally, analyze potential differences in quality of palliative care between hospice and home care settings. Results demonstrated that QPM-SF has good psychometric properties. A four-factor solution proved to be the most adequate for our sample: the four factors extracted were Integrated home care, Hospice, Physical care-InformationGlobal evaluation, and Needs, all of which demonstrated very good internal consistency. Temporal stability was assessed within a subgroup of 50 participants who completed the questionnaire a second time after a one month period. Test-retest coefficients were very strong for the Integrated home care and Hospice subscales, whereas they were sufficient to moderate for the Physical care-Information-Global evaluation and Needs subscales. Because the Physical careInformation-Global evaluation subscale assesses more technical and idiosyncratic issues (e.g., degree of treatment’s effectiveness on pain and other symptoms, adequacy of the amount of information received) than other factors, these items may be less stable over time. Moreover, because individuals may experience and adapt to the grieving process in a variety of ways over time (e.g., increased recovery, depression, or anger), the expression of current needs on the fourth subscale may be different at Time 2,
Table 3 Means and SDs for QPM-SF Subscales Scales
Mean SD Total Sample
Integrated home care Hospice Physical care-Information-Global evaluation Needs
37.43 25.95 41.50 11.33
QPM-SF ¼ Post Mortem Questionnaire-Short Form.
5.96 3.70 6.66 4.97
Mean SD Hospice Group
41.91 6.35 10.90 4.57
Mean SD Home care Group
Possible Score Range
41.04 6.97 11.80 5.34
9e45 6e30 10e50 6e30
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Table 4 Temporal Stability of the Four Subscales of QPM-SF Scales Integrated home care Hospice Physical care-Information-Global evaluation Needs
Intraclass Correlation Coefficient 0.98 0.97 0.70 0.66
QPM-SF ¼ Post Mortem Questionnaire-Short Form.
compared with Time 1. In addition, we hypothesize that the formulation of some items on the Needs subscale may have been interpreted in one of the two ways, thereby influencing testretest reliability. Specifically, it may not have been clear whether respondents were asked to evaluate their actual needs during the relative’s illness or whether they were asked to indicate if they had complained about needs going unmet. Given this ambiguity, participants may have responded differently to certain items at each administration of QPM-SF. Overall, consistent with previous findings, caregivers indicated that they perceived palliative care interventions to be more effective than standard care. Indeed, although few studies have included satisfaction as an outcome and used well-validated tools, recent studies and systematic reviews have found that palliative care and hospice teams improve satisfaction.2,5,12,25 Moreover, although patients in the home care condition received care for a longer period than did those in the hospice condition, level of satisfaction was not moderated by duration of care. There were no differences between hospice and home care conditions on QPM-SF Physical care-Information-Global evaluation or Needs subscales. These data extend the limited literature regarding effectiveness in different settings. The results of our study are consistent with Higginson and Evans,15 which demonstrated that home, hospital, and inpatient specialist palliative care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, and reduced hospital admissions, with no differences between these different models. Conversely, these outcomes are in contrast with the review by Higginson et al., which suggested greater effectiveness for home palliative care interventions.11 To better understand the discrepant findings, we examined salient questionnaire
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items related to general satisfaction and palliative vs. standard care comparisons. Specifically, caregivers of patients in the hospice setting showed higher levels of general satisfaction compared with the home care group. This result may be attributable to the unique characteristics of inpatient hospice care, which offers 24 hour nursing care, access to immediate medication (for pain, nausea, etc.), and greater access to counseling services for both the patient and family members. Moreover, hospice nurses are available for continuous help in daily tasks (e.g., hygiene, transportation), which reduces the caregiver’s burden and facilitates adjustment to the bereavement process. Indeed, as reported by Skilbeck et al.,26 inpatient care can provide respite from ongoing caregiving responsibilities for family members. Additionally, some disadvantages of home care include difficulties related to staff continuity, communication, and economic/emotional burden.26,27 However, the home care caregivers evaluated palliative care as more advantageous compared with conventional care than did hospice caregivers. This finding may be attributed to next-of-kin experiences as described by Milberg and Strang.27 Their research demonstrated that the opportunity for patients to remain in the home, which feels more natural, facilitates visits by friends and family, and provides familiar surroundings, is a central positive aspect of home care. We believe that our study contributes to a better understanding of the elements of palliative care that are important for patients and families and provides important findings regarding the relationships between quality of care and satisfaction. Moreover, QPM-SF should be considered a useful and well-accepted instrument for evaluating these constructs. Indeed, a high percentage of caregivers completed and returned the questionnaire, and respondents offered several positive comments about the experience. It is important to note, however, that the evaluation of quality of care is influenced by the family’s general appraisals of their psychological experiences with the patient’s death.24 Furthermore, present results were based on a geographically restricted sample. These data should be replicated within other, more diverse samples. However, the patients and family caregivers within our sample reported
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demographic characteristics (e.g., prevalence of female caregivers, kinship of spouse or daughter) consistent with those described in other end-of-life studies.22,28 In conclusion, the routine use of a self-report questionnaire such as QPM-SF is essential for evaluating and implementing end-of-life interventions with the fundamental aim of improving the experiences of dying patients and their family caregivers.
Disclosures and Acknowledgments No funds were received in support of this study. None of the authors declare any conflicts of interest. The authors are grateful to Francesco Boz for assistance with the data analysis. Members of the QPM Group: Luciano Barbazza, RN, Domiciliary Palliative Care Service ‘‘Alberto Rizzotti’’ and Hospice ‘‘Casa dei Gelsi’’Charitable Institution ‘‘Advar’’ Onlus, Treviso; Cosimo De Chirico, MD, Domiciliary Palliative Care Service, Local Health Center n. 7, Pieve di Soligo; Giuseppe Fornasier, MD, Pain Therapy and Palliative Care Unit, Local Health Service n. 1, Belluno; Milena Guglielminetti, MSc, Palliative Care Service, Hospice ‘‘Le vette,’’ Local Health Service n. 2, Feltre; Elisabetta Leonardi, MSc, Domiciliary Palliative Care Service, Local Health Center n. 15, Alta Padovana; Franca Maina, RN, Charitable Institution for Domiciliary Oncological Assistance Onlus (ADO), Verona; Agostino Mascanzoni, MD, Hospice ‘‘Casa tua 2,’’ Local Health Service n. 1, Belluno; Giuseppe Micheletto, MD, Domiciliary Palliative Care Service, Local Health Service n. 13, Mirano-Dolo; Rosanna Primavera, MSc, Hospice ‘‘Il Melograno,’’ Local Health Center n. 15, Alta Padovana, Camposampiero; Gianvito Romanelli, MD, Hospice ‘‘San Giuseppe,’’ Local Health Center n. 20, Verona, Marzana; Luca Ottolini Luca, MD, Domiciliary Palliative Care Service and Hospice, U.O.A.P. North-Center Health District, Trento; and Modesto Zago, MD, Hospice ‘‘Centro cura e sollievo Paolo VI,’’ Local Health Center n. 16, Padova, Italy.
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