The challenge of return to work in workers with cancer: employer priorities despite variation in social policies related to work and health.

PURPOSE: This study explored employer's perspectives on (1) their experience of good practice related to workers diagnosed with cancer and their return to work (RTW), and (2) their perceived needs necessary to achieve good practice as reported by employers from nine separate countries. METHODS: Twenty-five semi-structured interviews were held in eight European countries and Israel with two to three employers typically including HR managers or line managers from both profit and non-profit organisations of different sizes and sectors. Interviews were recorded and transcribed verbatim. A grounded theory/thematic analysis approach was completed. RESULTS: Employers' experience with RTW assistance for workers with cancer appears to be a dynamic process. Results indicate that good practice includes six phases: (1) reacting to disclosure, (2) collecting information, (3) decision-making related to initial actions, (4) remaining in touch, (5) decision-making on RTW, and (6) follow-up. The exact details of the process are shaped by country, employer type, and worker characteristics; however, there was consistency related to the need for (1) structured procedures, (2) collaboration, (3) communication skills training, (4) information on cancer, and (5) financial resources for realizing RTW support measures. CONCLUSIONS: Notwithstanding variations at country, employer, and worker levels, the employers from all nine countries reported that good practice regarding RTW assistance in workers with a history of cancer consists of the six phases above. Employers indicate that they would benefit from shared collaboration and resources that support good practice for this human resource matter. IMPLICATIONS FOR CANCER SURVIVORS: Further research and development based on the six phases of employer support as a framework for a tool or strategy to support workers with a history of cancer across countries and organisations is warranted.

Follow-up care in cancer: adjusting for referral targets and extending choice.

BACKGROUND: Over recent years, several initiatives have impacted on the referral of patients to secondary care, most notably targets for urgent referral in suspected cancer and the patient choice agenda. At the same time, improved long-term survival in cancer has increased numbers attending follow-up, doubts about the effectiveness of specialist follow-up have emerged, and alternative models of follow-up have been tested. AIM: The aim of the study was to explore patient and carer perspectives on the flexibility and responsiveness of cancer services. This article focuses on findings relating to referral, subsequent outpatient appointments and cessation of outpatient follow-up. METHODS: Issues were explored in a qualitative study using face-to-face interviews with a purposive sample of 54 people affected by cancer. Data were analysed concurrently with data collection, using qualitative analysis software. FINDINGS: The study gave rise to a number of salient themes. Links were identified between three of these: choice and responsiveness during referral; the flexibility and responsiveness of outpatient appointment systems; and negotiating cessation of follow-up. It appeared that policy on urgent referrals might be adversely affecting practice relating to appointment systems and the continuance of follow-up. DISCUSSION AND CONCLUSIONS: Hospital-based cancer follow-up is being given decreasing priority because of doubts about effectiveness and a target-driven focus on referral. This is impacting on patients, who may value outpatient follow-up as a 'safety net' but have difficulties in obtaining appointments, and may be discharged without negotiation or adequate support. For these reasons, new forms of flexible/responsive aftercare are urgently needed.

The meaning of cancer: implications for family finances and consequent impact on lifestyle, activities, roles and relationships.

OBJECTIVE: This study explores the impact that cancer-related financial hardship/worries can have on family life. METHODS: Forty patients (19 male and 21 female) and 17 carers participated in a qualitative study, which drew on certain elements of grounded theory methods. Participants were 18 years or older and were accessed through a regional cancer centre, an acute National Health Service trust, a support group and the Macmillan Benefits Helpline. Interviews were transcribed verbatim and analysed thematically with the aid of nvivo 7 (QSR International, Cambridge, MA, USA). RESULTS: Many participants said that prior to experiencing cancer, they had never thought about its effects on finances. The early part of the cancer journey was characterised by a need to be positive about the future, limited discussion about money within families and a lack of action in relation to finances. Many participants, especially those of working age, described cancer-related financial worries and difficulties that had impacted on family lifestyle, roles and relationships. Consequences included house repossession, bankruptcy, loss of independence and relationship breakdown. CONCLUSIONS: Health and social care professionals have a role in prompting people affected by cancer to take stock of their finances early in the cancer trajectory, in order to avert knock-on effects. An approach that combines hope with proactivity is needed. More work into the long-term effects of financial difficulties/worries and specific financial issues that affect people from Black and minority ethnic backgrounds is needed.

Helping cancer survivors return to work: what providers tell us about the challenges in assisting cancer patients with work questions.

INTRODUCTION: Cancer patients and survivors report receiving little work-related advice from healthcare providers about how to manage their work during treatment or when to return after completing primary treatment. This study explores the extent to which health professionals involved with colorectal cancer patients address work matters during active treatment. METHODS: Eighteen health professionals from oncology, occupational health and general practice were interviewed. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Health professionals provide conflicting and limited information to patients regarding ability to work during treatment, or when to return to work thereafter. Lack of knowledge about impacts of treatment and symptoms on work ability and sustainability, particularly in relation to different occupations and work tasks resulted in providers offering minimal guidance to patients. Current practices relied on providers' previous experiences with employed patients, rather than a sound evidence-base. CONCLUSIONS: The type of work-related information given to patients by providers is not systematic. It is necessary to develop a better knowledge base about the impacts of cancer and its treatment on work ability, sustainability and return to work that would help providers to offer more tailored advice to patients, consistently. Therefore, it is appropriate to recommend that formal training for providers is necessary. Enhancing the quality of information and training for health professionals to provide better work-related support to patients during the early stages of treatment could enable individuals to manage their work more effectively and facilitate a successful transition from patient to survivor.

Additional financial costs borne by cancer patients: a narrative review.

PURPOSE: To review out-of-pocket costs related to cancer that are borne by patients and their families. METHODS: A literature search using key terms relating to out-of-pocket costs incurred by cancer patients and their families was undertaken to generate a comprehensive narrative synthesis of the information available. RESULTS: Four themes were identified: measuring costs; sources of costs; the impact of costs and reducing costs. The wide variety of measures for ascertaining hidden costs makes comparison of findings difficult; some articles cover a very narrow range of costs. Qualitative research is useful for elucidating a wide range of costs. Costs pertaining to hospital visits, nutrition and clothing are widely mentioned. Low additional expenditure may indicate that needs/wants are going unmet. Financial capacity to cope and subjective perception of impact are important. Low income, younger age, chemotherapy and living rurally are associated with greater impact. Extra expense can exert long-term effects on family finances. Primary care follow-up, telemedicine and treatments that entail fewer visits may serve to reduce patient costs. CONCLUSIONS: The key question is how to organise/deliver cancer care in order to reduce additional expenses to patients and families. Future research could identify critical time-points and demographic groups susceptible to significant additional costs, in order to target support at those most in need.

Cancer support group participation in the United Kingdom: a national survey.

PURPOSE: Existing data on cancer support groups come largely from small studies in specific geographic areas, particularly in the UK. This study was designed on a national scale to describe the characteristics of support group members and examine associations between group and participant variables and perceived outcomes. MATERIALS AND METHODS: A postal survey of support groups in the UK was performed with group leaders asked to distribute questionnaires to their members. Questionnaires included sections for demographic and medical information, group attendance, perceived outcomes and psychosocial variables. RESULTS: From an original pool of 2,883 members from 206 groups, a total of 748 patient members within 172 support groups participated. Females comprised 68.2% of the sample, mean age was 65.4 ± 10.2 years, and 73.3% were retired. Post-secondary education was reported by 42.2%, and the proportion living in the two least deprived quartiles was 35.6%. Participants were a mean of 76.5 ± 67.4 months post-diagnosis, with 60.6% in remission. Breast cancer was the most common diagnosis (48.8%). The mean length of membership was 56.0 ± 54.7 months. Frequency of perceived benefits was positively associated with length of membership and attendance record. Psychosocial outcomes did not differ based on group variables. CONCLUSION: Support group participants are more often female, white, retired, married and long-term cancer survivors. Contrary to earlier studies, support group members do not tend to have high educational achievements or socioeconomic status. Perceived benefits are highest among long-term members and regular attenders.

Critical appraisal guidelines for assessing the quality and impact of user involvement in research.

BACKGROUND: The involvement of service users in the design and conduct of health research has developed significantly in the UK in recent years. Involving service users is now seen as a core component of good research practice for all forms of health research. Given the important role that users have in health research, it is necessary to develop guidelines for their effective involvement. Whilst guidelines are currently being formulated, there remain no criteria with which to assess user involvement in published studies and funding applications. OBJECTIVE: This study offers guidelines for appraising the quality and impact of user involvement in published papers and grant applications. METHODS: Appraisal guidelines for user involvement have been developed on the basis of available literature and experiences from studies involving cancer patients and carers in the design and conduct of research. FINDINGS: Nine appraisal criteria have been developed. Criteria include issues such as 'Is the rationale for involving users clearly demonstrated?', 'Is the level of user involvement appropriate?', 'Is the recruitment strategy appropriate?', and 'Is the nature of training appropriate?' CONCLUSION: Generating and applying guidelines is vital if the impact of user involvement agenda in health research is to be understood.

Characteristics of professionally-led and peer-led cancer support groups in the United Kingdom.

INTRODUCTION: Support group participation has various benefits for cancer survivors. This study explored the provision of support groups for cancer survivors in the United Kingdom (UK), and examined differences between professionally and peer-led groups. METHODS: Leaders of cancer support groups in the UK were invited to take part in a national postal survey. Questionnaires included sections for group structure information, and leader characteristics and training needs. RESULTS: Survey response was 59.6% with a total of 315 participants. Of these, 227 (72.1%) were peer-leaders, and 88 (27.9%) health-professional leaders. Peer-led groups were more likely to be run by a committee (66.1% vs 27.3%; χ (2)=38.6; p<0.001) and provide additional activities (e.g., home visits, telephone support, social events) than professionally-led groups. There were no differences between professional and peer leaders in the number of years of support group leadership experience, and previous support group training. However, more professional leaders perceived a need for training than peer leaders (67.0% vs 48.0%; χ (2)=9.2; p=0.002), although the types of training desired were not different. CONCLUSIONS: Support group provision was widespread and varied in nature. Few differences were observed between peer and professional groups. More professional leaders identified training needs than peer leaders, although types of training desired were similar. IMPLICATIONS FOR CANCER SURVIVORS: A wide range of support groups are available for cancer survivors in the UK. Peer-led groups are more common, and they are more likely to offer services in addition to regular meetings than professionally-led groups.

Return to work after cancer in the UK: attitudes and experiences of line managers.

INTRODUCTION: With improvements in diagnosis, treatment and survival rates, returning to work after cancer is of increasing importance to individuals and employers. Although line managers can play a potentially important role in the return to work process, research thus far has focused on the return to work process from the perspective of cancer survivors. AIM: To explore the attitudes of line managers towards employees with a cancer diagnosis. METHODS: A short self-administered, on-line questionnaire was circulated to managers in the North East of England. Factorial structures of the line managers' attitudes survey was examined using exploratory factor analysis and the effect of demographic characteristics and organisational variable on the attitudes of line managers was examined using multivariate analysis of variance (MANOVA). RESULTS: Line managers' attitudes can be conceptualized according to five empirical factors: (a) fearful attitudes towards cancer survivors, (b) supportive attitudes, (c) line-managers' perceived burden, (d) maintaining normality, and (e) financial benefits issues. Overall, line-managers hold relatively positive attitudes toward cancer survivors and are willing to support them in their effort to return to work. However, managers tend to harbour negative attitudes regarding the individual cancer survivors' ability both to engage in work related activities and in meeting the demands of employment. MANOVA results also indicated that female managers hold more positive attitudes than male managers toward cancer diagnosis, less concerned about workload burdens of working with cancer survivors, and more willing to help cancer survivors maintain normality. CONCLUSIONS: The results of this study suggest that employers/line-managers need to be provided with training, support, and resources to help them facilitate employment and job retention of employees diagnosed with cancer.

Cancer survivorship and return to work: UK occupational physician experience.

BACKGROUND: Survivorship following diagnosis of cancer is increasing in prevalence. However, cancer survivors continue to report difficulty re-entering the workplace after diagnosis and treatment. AIMS: To survey UK occupational health physicians (OHPs) regarding their role in rehabilitation of employed survivors of cancer. METHODS: Following a pilot study, a questionnaire exploring opinions of OHPs regarding supporting cancer survivors' return to work was posted to all members of the UK Society of Occupational Medicine, with a repeat posting 2 months later. Responses were analyzed for significant correlations with OHP age, sex, qualification level, size of businesses advised and years of experience. RESULTS: There were 797 respondents (response rate 51%). Responses suggested opportunities for developing the knowledge base in relation to prognosis and functional outcomes in patients with a cancer diagnosis; instituting information resources on cancer and work for OHPs and developing communications skills training. Most respondents felt managers treated referral to occupational health (OH) differently for employees with cancer compared with management referral for employees with other diagnoses, with 45% of respondents indicating referral may take place too late to be effective in securing a return to work. A significant lack of understanding of the information requirements of employers and the role of OH by treating doctors was identified. CONCLUSIONS: This survey raises several possible significant barriers to return to work by cancer survivors. Recommendations to ameliorate these are made.

Cancer survivors' views of work 3 years post diagnosis: a UK perspective.

The impact of cancer on people's working lives is an increasingly important concern but knowledge on this issue is very limited in the UK. Forty-one people of working age were purposively selected from the North Western Cancer Intelligence Service and interviewed by telephone to describe their experiences to returning to work following diagnosis and treatment. The data was subject to qualitative thematic analysis using NVIVO software. The results indicated the importance of returning to work from diagnosis and through treatment which was then followed by a re-assessment of work-life balance when people recovered from primary treatment and were back in employment. The principle motivations for returning to work were a quest for normality and financial pressures. One barrier to returning to work was the lack of medical advice from cancer specialists and general practitioners regarding the appropriate time to get back to work. A good relationship with their employer/manager was a major influence on returning to work and appeared to be related to duration of service rather than occupational status. These findings demonstrate the importance of paid work to people diagnosed with cancer and highlight the need to improve the support from medical professionals, especially oncology nurses.

Cancer and disability benefits: a synthesis of qualitative findings on advice and support.

Following the Supportive and Palliative Care Guidance, a call was made for a meta-ethnography on social support services for people affected by cancer. We responded by focusing on the topic of financial advice and support. After a scoping exercise revealed little qualitative evidence, we adopted the chief aim of identifying issues for research. Over 50 keywords relating to patient finances, cancer and qualitative research were entered into electronic search databases and combined. Because of the nature of the literature found, we synthesized primary data into themes and discussion, rather than second-order constructs into third-order constructs, as is common in meta-ethnography. Most of the literature found serves pragmatic, campaigning and/or service-development objectives. Also, most relates to disability benefits rather than insurance, tax and other issues. Five themes emerged: patients' struggles to obtain financial advice and benefits; tests/rules for disability benefits; issues relating to 'Special Rules'; intervention by benefit advisers; and intervention by health/social-care professionals. Struggles with the benefit system emerged as the fundamental theme. We conclude that patients need sensitive, proactive services to assist with benefit claims, and a benefit system that seems supportive rather than obstructive. Numerous under-researched topics were identified, including the need for general financial advice, help for carers, and cultural issues.

Meeting the ongoing needs of survivors of rarer cancer.

With more treatment options for people with cancer long-term survivorship is increasing. Physical and psycho-social needs have been identified in survivors of common cancers but very little has been written about the needs of patients with rarer cancers. Patients treated for rarer cancer are discharged to the primary health care team (PHCT), yet little is known about the assessment, management and support of these patients. Thirty-nine semi-structured interviews were conducted with (1) survivors of and (2) people living with rarer cancer (i.e. <5% of cancer burden). Participants were asked about physical and psycho-social needs and service provision. Data were analysed thematically using Atlas ti. Contrary to expectation, disease-free survivors of rarer cancer were indistinguishable from those living with disease in their ability to cope, and range of symptoms and needs. Participants with a clinical nurse specialist (CNS) reported that they were well supported on their return home and their needs were met. Participants without a CNS were referred to the PHCT who were unsure how to assess or support them. These participants felt abandoned. There is a need for the rehabilitation of patients with rarer cancer to strengthen individual coping mechanisms, and family and social support. Although there are resource and training implications, this is a potential role for the PHCT, district nursing in particular, and may lead to more focused and targeted provision of services.

Return to paid work after cancer: a British experience.

INTRODUCTION: The impact of cancer on people's working lives is an increasingly important concern, yet, little is known regarding return to work after cancer in England. The rate of cancer patients who returned to paid employment within 18 months of diagnosis, and explored associations with demographic, clinical and work perception in one English region was investigated. MATERIALS AND METHODS: A postal survey of all cancer patients registered in North West England from June 2002 through December 2002. Participants were between the ages 18-55 with a primary diagnosis of cancer, in paid employment at the time of diagnosis and being judged by their General Practitioners as suitable for return to work. RESULTS: Two hundred sixty-seven eligible patients returned a completed consent form and questionnaire, a response rate of 50%. The median age was 48 years. The majority of respondents (48%) were female with breast cancer, followed by colorectal (14%), prostate (9%) and lung cancers (6%). 82% of respondents returned to work. Treatment modality (absence of surgery) and the length of sick-leave were the only significant factors related to return to work (Odds Ratio 0.28 95% CI 0.08-0.94; Odds Ratio 1.68 95% CI .1.23-2.28). The median length of sickness absence was less than 6 months, longer in the most economically deprived quintile. One fifth of those who returned to work reported deterioration in job satisfaction and career prospects. CONCLUSIONS: While a high proportion of respondents managed to return to their place of work 20% were not able to do so. The duration of sick leave absence was associated with more difficulties in returning to work. Despite the fact that males were more likely than females to take no sick leave, they were more likely to take longer periods of absence when they did (18 months and over). In addition, the length of sick leave was greatest in the most economically deprived group, and in those survivors of cancer diagnosis and treatment who did not receive surgery.