- Email: [email protected]
Research round up
ARTICLE IN PRESS European Journal of Oncology Nursing (2006) 10, 161–164
www.elsevier.com/locate/ejon
Research round up Daniel Kellya, Faith Gibsonb a
School of Health and Social Science, Middlesex University, London, UK Centre for Nursing and Allied Health Professions Research, Institute of Child Health/Great Ormond Street Hospital NHS Trust/King’s College London, London, UK
b
This section provides examples of recent research of interest to cancer nurses. It covers treatment advances, service developments, the experiences of patients and carers and paediatric issues.
Treatment advances Moss S, Gray A, Legood R & Vessey M et al. (2006) Effect of human papillomavirus as a triage during screening for cervical cancer: observational before and after study. British Medical Journal 332: 83–85 As human papillomavirus (HPV) is associated with all invasive cervical cancers, as well as a majority of precancerous lesions, its detection during cervical screening may be beneficial. This study was carried out using three pilot sites within the NHS cervical screening programme. These sites consisted of cytopathology laboratories that were converted to use liquid-based cytology combined with testing for HPV in women with borderline or mildly dyskaryotic cervical smear results. A total of 46% of women with borderline and 82.6% with mildly dyskaryotic smear results were found to be HPV positive. Women who tested positive were referred immediately for colposcopy. Those who tested negative were also referred if, at 6 months, their cytology worsened or if they then tested positive for HPV. The rates of repeat smears E-mail addresses: [email protected] (D. Kelly), [email protected] (F. Gibson).
dropped after triaging women on the basis of their HPV result. Colposcopy rates, however, increased. Detection rates for cervical intraepithelial neoplasia grades 2 and 3 also increased during the study, although the authors suggest this may simply represent more efficient diagnosis of prevalent disease. The study raises a number of ethical and practical issues concerning the need to balance the scientific basis of cancer risk assessment with the appropriate clinical, information and support services. The investment required to support colposcopy, for instance, mirrors debates in other cancers about the need to balance cancer science with the development of services required to translate findings into practice.
Cancer service developments Gomes B & Higginson I (2006) Factors influencing death at home in terminally ill patients with cancer: a systematic review. British Medical Journal 332: 515–521 The aim of this study was to examine the influence of specific evidence-based factors that may determine whether death at home is achieved by patients with cancer. These factors may include illness-related issues as well as individual and social circumstances. Published papers from four major databases were extracted and subjected to review using an evaluative tool designed for the study. The strength of the evidence was judged against a
1462-3889/$ - see front matter & 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2006.03.002
ARTICLE IN PRESS 162 range of criteria such as eligibility design, study design, sampling, response rate and analysis. The quality of studies meeting the required criteria was rated by one researcher; with 20% also being randomly checked by the second. Fifty-eight studies were finally included involving over 1.5 million patients from 13 countries. Evidence that was considered to be of ‘high strength’ revealed the factors that determined whether home death was more likely to be achieved. These included patient’s low functional status; patient preferences; home care availability; level of intensity of support available; living with relatives and extended family support. The findings of this interesting review suggest the need for more awareness of the importance that may be attached to being able to die at home for some people. There is also an argument for more robust evaluation of novel schemes aimed at increasing the availability of end of life care in the home setting. Importantly, families and carers will need to be encouraged, empowered and supported if they are to play a more central role in this phase of care.
The experiences of patients and carers Thomas N, Saleem T & Abraham R (2005) Barriers to effective uptake of cancer screening among black and minority ethnic groups. International Journal of Palliative Nursing 11: 562–571 This study was designed to explore some of the factors that may act as barriers to the effective uptake of breast and cervical screening among black and minority (BME) groups in one region of the UK. Eighty-five women and 50 men from African Caribbean, African, Gujurati, Pakistani, Greek and Arabic communities were asked to take part in focus group discussions. These were concerned with their perceptions of cancer screening and any barriers that may be associated with it. A numbers of these barriers were revealed in the group discussions including language (a factor most commonly reported by representatives of Gujurati and Muslim communities). Specific linguistic nuances of language may not be present in published sources leading to the importance of cancer screening not being appreciated. Also revealed were strong cultural beliefs about the body and the extent to which it is permissible to display it to professionals. Young women form Pakistani Muslim backgrounds spoke of ‘binning’ invitations to attend cervical screening to prevent any suspicion of sexual activity from parents or partners. Similar attitudes were present in some young women of
D. Kelly, F. Gibson Greek communities. A common finding were the negative attitudes, or poor communication skills, of some health care professionals. General practitioners were seen as crucial in determining whether screening would be accessed. Religion was also important in shaping health beliefs and behaviours—factors that health professionals may not always appreciate fully. It was disappointing, however, not to see more information from the men who took part in the study. Despite this limitation the authors provide useful insights into the challenges facing health providers of multicultural populations. Failure to provide appropriate and culturally competent cancer screening services means that vulnerable groups will remain excluded from the available services. In the long term this is likely only to add to the burden on cancer treatment services.
Paediatric issues Earle EA, Davies H, Greenfield D, Ross R & Eiser C (2005) Follow-up care for childhood cancer survivors: a focus group analysis. European Journal of Cancer 41(18): 2882–2886 One in 1000 young adults is a survivor of childhood cancer, and 5-year post-diagnosis survival rates now exceed 70%. It has been projected that by the year 2010, 1 in 715 young people will be survivors of cancer. Despite such positive increases in survival it is estimated that approximately 60% of this population will have one or more treatment or disease-related late effects, with over 30% of these effects being classified as moderate or severe. The challenge is to sustain and improve current survival rates whilst optimising quality of life. Current provision of follow-up services is fragmented and variable, with many survivors not receiving appropriate care. This study conducted a series of seven focus groups in the UK to gather views of both survivors and their parents. Twenty-six childhood cancer survivors with a range of cancer diagnoses who were more than 5 years off therapy participated. This included 10 males and 16 females who were between 13 and 25 years. Thirty-three parents participated. Standard procedures for conducting focus groups were followed. These were taped, transcribed and analysed according to interpretative phenomenological: a method used to understand the subjective experience of an individual. Three superordinate themes were described: strategies to achieve normal life; expectations of follow-up; and preferences for different models of care. A range of views was revealed.
ARTICLE IN PRESS Research round up There were some participants who wished to move on, lead a normal life, and not worry about future health risks. In contrast, there were others who persistently monitor their health, want more risk information, seem more anxious and are keen to maintain links with the hospital. Such divergent views emphasise the need to take account of individual expectations and need for follow-up care when any restructuring of health care delivery is being considered. Mayer DK, Parsons SK, Terrin N, Tighiouart H, Jeruss S, Nakagawa K, Iwata Y, Haras J & SaikiCraighill S (2005) School re-entry after a cancer diagnosis: physician attitudes about truth telling and information sharing. Child: Care, Health & Development 31(3): 355–363 School re-entry for children with cancer marks a return to age-appropriate activities; a process that can be fraught with adjustment challenges. Planning for absences from school and school re-entry feature throughout the cancer trajectory. The paediatric oncologist is in a pivotal role to set the tone and provide direction to the child, family, and other members of the health care team about this process. An understanding of clinician attitudes and behaviours on school re-entry could provide insight into this important aspect of transition for the child. This study sought to describe practices of paediatric oncologists regarding direct communication with children ages 10–17 years with cancer. This study also sought to compare practices within the United Sates and Japan. A four-part survey exploring general attitudes, patient factors, work cultures and respondent characteristics was developed from the literature and distributed to members of US (n ¼ 350) and Japanese (n ¼ 362) paediatric oncology professional societies. The survey was formally translated forward and backward from both languages and pilot-tested for clarity and equivalence in both countries. Descriptive statistics were calculated for all survey responses, testing all domains of the questionnaire to the ‘return to normal scenario’: the scenario reflected the range of how school re-entry might be handled, from telling no one to telling everyone. In contrast to Japanese clinicians, US clinicians overwhelmingly chose telling the child’s school officials and classmates. There was also variation in relation to communicating the diagnosis, in the US it is common to tell everyone, and in Japan this is less common. Supporting withholding information means that preparing children and others for school re-entry is problematic. Programmes for school reentry were described as useful approaches, however their availability or use was not a feature of this study. The authors agree that many of the
163 findings may reflect larger cultural issues and approaches to service delivery surrounding the care of children with cancer. Upton P & Eiser C (2006) School experiences after treatment for a brain tumour. Child: Care, Health & Development 32(1): 9–17 Children surviving a brain tumour face major difficulties including learning problems, lengthy school absences and psychosocial problems, all of which can impact on school functioning. After the end of treatment, children are expected to be ‘back to normal’ and achieve as well as others. In reality, they remain at considerable disadvantage. Whilst the special needs of children with a brain tumour have long been recognised, no national programme has been developed to rehabilitate survivors or provide educational support. This study sought to describe the special education need (SEN) of these children; document the impact of diagnosis and treatment on school attendance; and compare parent and teacher assessments of social, emotional and behavioural difficulties. A crosssectional sample of children in the UK whose original diagnosis was a brain tumour and were 6–16 years old were surveyed. Forty families agreed to participate. Measures included: semistructured interviews with mothers focused on school attendance, peer relationships and perceptions of physical and educational needs before and after diagnosis and the current time; teachers completed a brief questionnaire about present and past SEN and asked to clarify the child’s current status; parents and teachers completed the Strengths and Difficulties Questionnaire (SDQ). Descriptive statistics were calculated for SEN and school attendance both during the diagnosis and treatment as well as the past school year. SDQ was calculated according to standard instructions and compared using paired sample t-tests. The majority of survivors had SEN (31 out of 40 children), with over half the group (n ¼ 26) having a formal statement of need. According to mother and teacher reports, the children were experiencing a wide range of physical, interpersonal and learning difficulties. Literacy and numeracy were the most common learning difficulties. Significant problems remained at a time when children are considered medically cured. Closer school hospital liaison and the provision of appropriate support and information are essential to maximise integration and achievement in these children. Eiser C, Davies H, Jenney M & Glaser A (2005) Mothers’ attitudes to the randomised controlled trial RCT: the case of acute lymphoblastic leukaemia (ALL) in children. Child: Care, Health & Development 31(5): 517–523
ARTICLE IN PRESS 164 There is no question that survival rates for childhood cancer have improved substantially partly as a result of national and international randomised clinical trials (RCT). One of the main reasons for this is that they aid more rapid accumulation of data and suggest new directions for treatment in a way that would not have been possible without such collaboration. Overall, recruitment to RCTs by paediatric oncologists has been successful, more so than rates for trials of adult cancers. The consenting process is not without its challenges however, where very complex information may need to be imparted at a very stressful time with often little time for discussion. Previous studies have reported that 50% of parents do not understand the randomisation process even after careful discussion. In the most recent ALL trial in the UK clinicians were required to give families full information about the disease and treatment including information about randomisation almost immediately after diagnosis: randomi-
D. Kelly, F. Gibson sation occurred on day 1. This study focussed specifically on parents’ understanding of trials and reasons for their decision about whether to consent or not. Fifty mothers of children participated, out of which all but three had consented for their child to be entered into the trial. Semistructured interviews were undertaken between 3 and 5 months after the diagnosis. Interviews were transcribed and analysed thematically. Five themes were identified: reasons for participating; views about the consenting process; understanding the trial; side effects, uncertainties associated with the decision; and preferences for different arms of the trial. The narratives of mothers demonstrated a lack of understanding of randomisation. They appeared to be poorly informed about the purpose of the trial, and the possibility of side effects. These data raise questions about the extent to which families give truly informed consent to recruitment of their child to an RCT.
www.elsevier.com/locate/ejon
Research round up Daniel Kellya, Faith Gibsonb a
School of Health and Social Science, Middlesex University, London, UK Centre for Nursing and Allied Health Professions Research, Institute of Child Health/Great Ormond Street Hospital NHS Trust/King’s College London, London, UK
b
This section provides examples of recent research of interest to cancer nurses. It covers treatment advances, service developments, the experiences of patients and carers and paediatric issues.
Treatment advances Moss S, Gray A, Legood R & Vessey M et al. (2006) Effect of human papillomavirus as a triage during screening for cervical cancer: observational before and after study. British Medical Journal 332: 83–85 As human papillomavirus (HPV) is associated with all invasive cervical cancers, as well as a majority of precancerous lesions, its detection during cervical screening may be beneficial. This study was carried out using three pilot sites within the NHS cervical screening programme. These sites consisted of cytopathology laboratories that were converted to use liquid-based cytology combined with testing for HPV in women with borderline or mildly dyskaryotic cervical smear results. A total of 46% of women with borderline and 82.6% with mildly dyskaryotic smear results were found to be HPV positive. Women who tested positive were referred immediately for colposcopy. Those who tested negative were also referred if, at 6 months, their cytology worsened or if they then tested positive for HPV. The rates of repeat smears E-mail addresses: [email protected] (D. Kelly), [email protected] (F. Gibson).
dropped after triaging women on the basis of their HPV result. Colposcopy rates, however, increased. Detection rates for cervical intraepithelial neoplasia grades 2 and 3 also increased during the study, although the authors suggest this may simply represent more efficient diagnosis of prevalent disease. The study raises a number of ethical and practical issues concerning the need to balance the scientific basis of cancer risk assessment with the appropriate clinical, information and support services. The investment required to support colposcopy, for instance, mirrors debates in other cancers about the need to balance cancer science with the development of services required to translate findings into practice.
Cancer service developments Gomes B & Higginson I (2006) Factors influencing death at home in terminally ill patients with cancer: a systematic review. British Medical Journal 332: 515–521 The aim of this study was to examine the influence of specific evidence-based factors that may determine whether death at home is achieved by patients with cancer. These factors may include illness-related issues as well as individual and social circumstances. Published papers from four major databases were extracted and subjected to review using an evaluative tool designed for the study. The strength of the evidence was judged against a
1462-3889/$ - see front matter & 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2006.03.002
ARTICLE IN PRESS 162 range of criteria such as eligibility design, study design, sampling, response rate and analysis. The quality of studies meeting the required criteria was rated by one researcher; with 20% also being randomly checked by the second. Fifty-eight studies were finally included involving over 1.5 million patients from 13 countries. Evidence that was considered to be of ‘high strength’ revealed the factors that determined whether home death was more likely to be achieved. These included patient’s low functional status; patient preferences; home care availability; level of intensity of support available; living with relatives and extended family support. The findings of this interesting review suggest the need for more awareness of the importance that may be attached to being able to die at home for some people. There is also an argument for more robust evaluation of novel schemes aimed at increasing the availability of end of life care in the home setting. Importantly, families and carers will need to be encouraged, empowered and supported if they are to play a more central role in this phase of care.
The experiences of patients and carers Thomas N, Saleem T & Abraham R (2005) Barriers to effective uptake of cancer screening among black and minority ethnic groups. International Journal of Palliative Nursing 11: 562–571 This study was designed to explore some of the factors that may act as barriers to the effective uptake of breast and cervical screening among black and minority (BME) groups in one region of the UK. Eighty-five women and 50 men from African Caribbean, African, Gujurati, Pakistani, Greek and Arabic communities were asked to take part in focus group discussions. These were concerned with their perceptions of cancer screening and any barriers that may be associated with it. A numbers of these barriers were revealed in the group discussions including language (a factor most commonly reported by representatives of Gujurati and Muslim communities). Specific linguistic nuances of language may not be present in published sources leading to the importance of cancer screening not being appreciated. Also revealed were strong cultural beliefs about the body and the extent to which it is permissible to display it to professionals. Young women form Pakistani Muslim backgrounds spoke of ‘binning’ invitations to attend cervical screening to prevent any suspicion of sexual activity from parents or partners. Similar attitudes were present in some young women of
D. Kelly, F. Gibson Greek communities. A common finding were the negative attitudes, or poor communication skills, of some health care professionals. General practitioners were seen as crucial in determining whether screening would be accessed. Religion was also important in shaping health beliefs and behaviours—factors that health professionals may not always appreciate fully. It was disappointing, however, not to see more information from the men who took part in the study. Despite this limitation the authors provide useful insights into the challenges facing health providers of multicultural populations. Failure to provide appropriate and culturally competent cancer screening services means that vulnerable groups will remain excluded from the available services. In the long term this is likely only to add to the burden on cancer treatment services.
Paediatric issues Earle EA, Davies H, Greenfield D, Ross R & Eiser C (2005) Follow-up care for childhood cancer survivors: a focus group analysis. European Journal of Cancer 41(18): 2882–2886 One in 1000 young adults is a survivor of childhood cancer, and 5-year post-diagnosis survival rates now exceed 70%. It has been projected that by the year 2010, 1 in 715 young people will be survivors of cancer. Despite such positive increases in survival it is estimated that approximately 60% of this population will have one or more treatment or disease-related late effects, with over 30% of these effects being classified as moderate or severe. The challenge is to sustain and improve current survival rates whilst optimising quality of life. Current provision of follow-up services is fragmented and variable, with many survivors not receiving appropriate care. This study conducted a series of seven focus groups in the UK to gather views of both survivors and their parents. Twenty-six childhood cancer survivors with a range of cancer diagnoses who were more than 5 years off therapy participated. This included 10 males and 16 females who were between 13 and 25 years. Thirty-three parents participated. Standard procedures for conducting focus groups were followed. These were taped, transcribed and analysed according to interpretative phenomenological: a method used to understand the subjective experience of an individual. Three superordinate themes were described: strategies to achieve normal life; expectations of follow-up; and preferences for different models of care. A range of views was revealed.
ARTICLE IN PRESS Research round up There were some participants who wished to move on, lead a normal life, and not worry about future health risks. In contrast, there were others who persistently monitor their health, want more risk information, seem more anxious and are keen to maintain links with the hospital. Such divergent views emphasise the need to take account of individual expectations and need for follow-up care when any restructuring of health care delivery is being considered. Mayer DK, Parsons SK, Terrin N, Tighiouart H, Jeruss S, Nakagawa K, Iwata Y, Haras J & SaikiCraighill S (2005) School re-entry after a cancer diagnosis: physician attitudes about truth telling and information sharing. Child: Care, Health & Development 31(3): 355–363 School re-entry for children with cancer marks a return to age-appropriate activities; a process that can be fraught with adjustment challenges. Planning for absences from school and school re-entry feature throughout the cancer trajectory. The paediatric oncologist is in a pivotal role to set the tone and provide direction to the child, family, and other members of the health care team about this process. An understanding of clinician attitudes and behaviours on school re-entry could provide insight into this important aspect of transition for the child. This study sought to describe practices of paediatric oncologists regarding direct communication with children ages 10–17 years with cancer. This study also sought to compare practices within the United Sates and Japan. A four-part survey exploring general attitudes, patient factors, work cultures and respondent characteristics was developed from the literature and distributed to members of US (n ¼ 350) and Japanese (n ¼ 362) paediatric oncology professional societies. The survey was formally translated forward and backward from both languages and pilot-tested for clarity and equivalence in both countries. Descriptive statistics were calculated for all survey responses, testing all domains of the questionnaire to the ‘return to normal scenario’: the scenario reflected the range of how school re-entry might be handled, from telling no one to telling everyone. In contrast to Japanese clinicians, US clinicians overwhelmingly chose telling the child’s school officials and classmates. There was also variation in relation to communicating the diagnosis, in the US it is common to tell everyone, and in Japan this is less common. Supporting withholding information means that preparing children and others for school re-entry is problematic. Programmes for school reentry were described as useful approaches, however their availability or use was not a feature of this study. The authors agree that many of the
163 findings may reflect larger cultural issues and approaches to service delivery surrounding the care of children with cancer. Upton P & Eiser C (2006) School experiences after treatment for a brain tumour. Child: Care, Health & Development 32(1): 9–17 Children surviving a brain tumour face major difficulties including learning problems, lengthy school absences and psychosocial problems, all of which can impact on school functioning. After the end of treatment, children are expected to be ‘back to normal’ and achieve as well as others. In reality, they remain at considerable disadvantage. Whilst the special needs of children with a brain tumour have long been recognised, no national programme has been developed to rehabilitate survivors or provide educational support. This study sought to describe the special education need (SEN) of these children; document the impact of diagnosis and treatment on school attendance; and compare parent and teacher assessments of social, emotional and behavioural difficulties. A crosssectional sample of children in the UK whose original diagnosis was a brain tumour and were 6–16 years old were surveyed. Forty families agreed to participate. Measures included: semistructured interviews with mothers focused on school attendance, peer relationships and perceptions of physical and educational needs before and after diagnosis and the current time; teachers completed a brief questionnaire about present and past SEN and asked to clarify the child’s current status; parents and teachers completed the Strengths and Difficulties Questionnaire (SDQ). Descriptive statistics were calculated for SEN and school attendance both during the diagnosis and treatment as well as the past school year. SDQ was calculated according to standard instructions and compared using paired sample t-tests. The majority of survivors had SEN (31 out of 40 children), with over half the group (n ¼ 26) having a formal statement of need. According to mother and teacher reports, the children were experiencing a wide range of physical, interpersonal and learning difficulties. Literacy and numeracy were the most common learning difficulties. Significant problems remained at a time when children are considered medically cured. Closer school hospital liaison and the provision of appropriate support and information are essential to maximise integration and achievement in these children. Eiser C, Davies H, Jenney M & Glaser A (2005) Mothers’ attitudes to the randomised controlled trial RCT: the case of acute lymphoblastic leukaemia (ALL) in children. Child: Care, Health & Development 31(5): 517–523
ARTICLE IN PRESS 164 There is no question that survival rates for childhood cancer have improved substantially partly as a result of national and international randomised clinical trials (RCT). One of the main reasons for this is that they aid more rapid accumulation of data and suggest new directions for treatment in a way that would not have been possible without such collaboration. Overall, recruitment to RCTs by paediatric oncologists has been successful, more so than rates for trials of adult cancers. The consenting process is not without its challenges however, where very complex information may need to be imparted at a very stressful time with often little time for discussion. Previous studies have reported that 50% of parents do not understand the randomisation process even after careful discussion. In the most recent ALL trial in the UK clinicians were required to give families full information about the disease and treatment including information about randomisation almost immediately after diagnosis: randomi-
D. Kelly, F. Gibson sation occurred on day 1. This study focussed specifically on parents’ understanding of trials and reasons for their decision about whether to consent or not. Fifty mothers of children participated, out of which all but three had consented for their child to be entered into the trial. Semistructured interviews were undertaken between 3 and 5 months after the diagnosis. Interviews were transcribed and analysed thematically. Five themes were identified: reasons for participating; views about the consenting process; understanding the trial; side effects, uncertainties associated with the decision; and preferences for different arms of the trial. The narratives of mothers demonstrated a lack of understanding of randomisation. They appeared to be poorly informed about the purpose of the trial, and the possibility of side effects. These data raise questions about the extent to which families give truly informed consent to recruitment of their child to an RCT.