A qualitative study of the post-treatment experiences and support needs of survivors of lymphoma

https://doi.org/10.1016/j.ejon.2017.03.002Get rights and content

Highlights

  • Focus groups with lymphoma survivors explored unmet needs and preferences for follow-up support.

  • Participants indicated a sense of loss when they completed treatment.

  • A common theme was the need to return to normal or a ‘new normal’.

  • Supportive survivorship care requires a flexible, tailored approach.

  • Health care professionals could provide individualised information and support when patients finish treatment.

Abstract

Purpose

To explore the post-treatment experiences and preferences for follow-up support of lymphoma survivors.

Methods

Two focus groups were conducted with 17 participants to explore informational, psychological, emotional, social, practical and physical needs, 6–30 months post-treatment for lymphoma. Perceptions regarding a potential model of survivorship care were also elicited.

Results

Thematic content analysis revealed five key themes: Information; Loss and uncertainty; Family, support and post-treatment experience; Transition, connectivity and normalcy, and Person-centred post-treatment care. Participants described a sense of loss as they transitioned away from regular interaction with the hospital at the end of treatment, but also talked about the need to find a “new normal”. Establishing post-treatment support structures that can provide individualised information, support, reassurance and referrals to community and peer support were identified as a helpful way to navigate the transition from patient to post-treatment survivor.

Conclusions

Participants in our study articulated a need for a flexible approach to survivorship care, providing opportunities for individuals to access different types of support at different times post-treatment. Specialist post-treatment nurse care coordinators working across acute and community settings may offer one effective model of post-treatment support for survivors of haematological malignancies.

Introduction

Lymphomas are complex, potentially life limiting haematological (blood) malignancies that have a marked impact on quality of life and long-term health as a consequence of the aggressive or chronic nature of the treatments required to manage them (Carey et al., 2012). Lymphomas are immune-related cancers, broadly categorised as non-Hodgkin or Hodgkin lymphoma, and can be indolent or aggressive in nature (National Cancer Institute, 2016). Advances in treatment efficacy, including haematopoietic stem cell transplants, bone marrow support with blood component transfusions and white cell stimulation, along with advances in decreasing severity of infection risk, remission rates have improved (Lichtman, 2008).

In Australia, the context for this study, the 2012 estimated age-standardised rates (ASRs) of Hodgkin lymphoma incidence and mortality were 2.7 and 0.3 respectively (Cancer Australia, 2017a). These figures compare favourably with the European Union (EU-27) estimated ASRs of Hodgkin lymphoma incidence (2.3) and mortality (0.4) for the same period (Ferlay et al., 2013). The estimated Australian ASRs of incidence and mortality for Non-Hodgkin lymphoma were 19.1 and 5.4 respectively compared with EU-27 estimated ASRs of 11.6 and 3.8 respectively (Cancer Australia, 2017b, Ferlay et al., 2013).

Late and long-term side effects of treatment for lymphoma are common and can include fatigue; nutritional and physical activity deficits; fertility, sexuality and relationship concerns; and financial, employment and insurance issues (Allart et al., 2013, Arden-Close et al., 2011, Hall et al., 2013b). As advances in remission and cure rates improve, survivors are living longer with the consequences of their disease and treatment (Sant et al., 2014), and many experience unmet needs that impact long-term health and wellbeing (Arden-Close et al., 2011). In a study of 53 long-term survivors of leukaemia and lymphoma (Zebrack, 2000), issues such as fatigue (n = 23, 42%), remained an ongoing problem. The authors indicated fear of recurrence and financial concerns were also predominant factors in long-term survivors (no figures given). In a study of 437 haematology survivors in Australia and Canada, fatigue was identified as the greatest unmet concern (n = 76, 16%), with the Australian cohort only (n = 268, 61%) reporting a higher level of unmet financial concerns (n = 39, 15%) (Hall et al., 2013a). Survivors of haematological malignancies have been show to experience ongoing issues up to a decade or more post-treatment completion (Ferrer et al., 2011). Severe fatigue impacting functional capacity, emotional well-being and ability to return to work (Ferrer et al., 2011, Kangas et al., 2008, Oerlemans et al., 2013), and persistent cognitive impairment have been reported as debilitating long-term effects of treatment (van der Poel et al., 2014).

There is limited evidence available to inform the development of patient-focused haematology survivorship services in Australia. However, some evidence exists to indicate patients' preferences for post-treatment follow-up care. In a study of 66 cancer survivors representing the major haematological diagnostic groups (non-Hodgkin lymphoma 48%, Hodgkin lymphoma 12%, multiple myeloma 26%, leukaemia 14%), help with managing the fear of recurrence (42%) and ongoing case management (33%) were identified as unmet needs in the post-treatment period (Lobb et al., 2009). The opportunity to discuss experiences with a health care professional at treatment completion was identified as potentially helpful by 59% of participants. McGrath (2014) reported findings from a qualitative study of 50 haematology survivors that explored use of routine telephone follow-up as a supportive care strategy. The sample represented the haematologic diagnostic groups of multiple myeloma (n = 15), lymphoma (n = 14) and leukaemia (n = 17). Although telephone follow-up support was perceived by the majority of participants as potentially beneficial, many individuals did not support the idea as they wanted to ‘move on’ from cancer and would not have welcomed any contact.

Unlike more common malignancies such as breast and prostate cancer, evidence to inform the development of optimal follow-up guidelines for haematological survivorship care is lacking. This study set out to explore the experiences of and preferences for post-treatment support in Australian survivors of lymphoma 6–30 months post-treatment completion. For the purpose of the study, participants were deemed ‘lymphoma survivors’ if their haematologist had documented ongoing remission at least six months from treatment completion as our intent was to better understand post-treatment support needs.

Section snippets

Methodological framework

We undertook a qualitative, descriptive study (Neergaard et al., 2009, Sandelowski, 2000) utilising focus groups to explore and better understand the post-treatment experiences and support needs of lymphoma survivors. Focus groups allow for collection of a broad range of information and insight when little is known or understood about a topic (Neergaard et al., 2009, Sandelowski, 2000), while providing peer support and normalisation of experiences that group participants may share. Excellent

Participants

Of the 79 eligible lymphoma participants, 11 returned opt-out forms without providing a reason for this decision. The remaining 68 participants were contacted to further explain the study and provide focus group details. Of these 22 (32%) agreed to participate in a focus group, however five people did not attend on the day. Reasons for non-participation included: migrating overseas/interstate (n = 2); recently relapsed or other cancer (n = 5); family bereavement (n = 1); working fulltime

Discussion

This research contributes to a small but growing body of literature reporting on post-treatment experiences and support needs of survivors of lymphoma. Data from our study identified five key themes of relevance to the post-treatment experience of lymphoma survivors: Information; Loss and uncertainty; Family, support and post-treatment experience; Transition, connectivity and normalcy, and Person-centred post-treatment care.

Information needs varied across participants in our study, reflecting

Conclusion

Survivors of lymphoma experience many and complex post-treatment issues that require tailored intervention as part of a comprehensive package of person-centred post-treatment care. Data from our study suggest that integration of professional, peer and family/important other support strategies may prove to be most effective. Specialist haematology nurse care coordinators working across tertiary and community settings could offer a feasible and efficient way of coordinating tailored programs of

Funding

The authors disclose the study was supported by funding from the Cancer and Palliative Care Research and Evaluation Unit, Western Australian Cancer and Palliative Care Network.

Conflict of interest

The authors have no funding or conflicts of interest to disclose.

Acknowledgements

We thank all participants for their willingness to participate in this important study.

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