Unmet needs of Australian and Canadian haematological cancer survivors: a cross‐sectional international comparative study

Hall, Alix; Campbell, H. Sharon; Sanson‐Fisher, Rob; Lynagh, Marita; DʼEste, Catherine; Burkhalter, Robin; Carey, Mariko

doi:10.1002/pon.3247

Cited by 49 publications

(62 citation statements)

References 25 publications

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“…The two Canadian’s considered the changes appropriate. A summary of this process is reported elsewhere [29]. …”

Section: Methodsmentioning

confidence: 99%

“…Compared to their counterparts, a higher level of some unmet needs has been found for cancer survivors: reporting not being in remission (stable, recurrent and metastatic disease) [18,45]; diagnosed at a younger age [29,42,45-50]; and receiving some cancer treatments [43,45,46,51]. Based on this previous research it was hypothesized that median domain scores would be higher for: (1) survivors reporting a disease recurrence vs. survivors not reporting a disease recurrence; (2) survivors aged younger than 60 years at diagnosis vs. survivors aged 60 years or older at diagnosis; and (3) survivors currently receiving active treatment (including, chemotherapy, radiotherapy, bone marrow/stem cell transplant or harvest, hormone, antibody and targeted therapy) vs. those not receiving active treatment.…”

Section: Methodsmentioning

confidence: 99%

“…Domain scores were calculated by summing all items in a domain and dividing by the number of non-missing items for participants who answered more than 70% of items in a domain [29]. Due to the non-normal distribution of the data participant domain scores were compared by recurrence, age group at diagnosis and treatment status using the Wilcoxon rank sum test.…”

Section: Methodsmentioning

confidence: 99%

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The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties

Hall

DʼEste

Tzelepis

et al. 2014

BMC Health Serv Res

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BackgroundRelevant and psychometrically sound needs assessment tools are necessary for accurate assessment of haematological cancer survivors unmet needs. No previous study has developed nor psychometrically evaluated a comprehensive needs assessment tool for use with population-based samples of haematological cancer survivors. This study aimed to assess the validity and reliability of the Survivor Unmet Needs Survey (SUNS) with haematological cancer survivors.MethodsThe relevance, content and face validity of the SUNS to haematological cancer survivors was assessed using qualitative interviews. Psychometric evaluation was conducted using data collected from haematological cancer survivors, aged 18–80 years at recruitment and recruited from four Australian cancer registries. Construct, convergent and discriminant validity; internal reliability and floor and ceiling effects were assessed. A second survey was completed by a sub-sample of survivors recruited from two of the four registries to assess test-retest reliability.ResultsResults from 17 qualitative interviews confirmed the relevance, face and content validity of the original items of the SUNS for use with haematological cancer survivors. Overall, 1,957 eligible haematological cancer survivors were contacted by the cancer registries. Of these 1,280 were sent a survey, and 715 returned a survey (37% of eligible survivors contacted and 56% of survivors sent a survey). A total of 529 survivors completed all 89 items of the SUNS and were included in the exploratory factor analysis. Exploratory factor analysis supported the original five-factor structure of the SUNS. Evidence for convergent validity was established, with all five domains of the SUNS illustrating a moderate positive correlation with all three subscales of the Depression Anxiety and Stress Scale (DASS-21). All Cronbach’s alpha values were above 0.9 and all corrected item-total correlations were acceptable (>0.2). Criteria for discriminant validity was not met, with only 10 of the 15 (67%) a-priori hypotheses supported. Test-retest reliability was acceptable for 40 of the 89 items (45%) and for three of the five domains. Significant floor effects were evident for all five domains.ConclusionsThe SUNS demonstrates evidence for multiple features of validity and reliability as a measure of unmet needs for haematological cancer survivors. However, evidence supporting some psychometric properties was limited.

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“…The two Canadian’s considered the changes appropriate. A summary of this process is reported elsewhere [29]. …”

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties

Hall

DʼEste

Tzelepis

et al. 2014

BMC Health Serv Res

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“…It is plausible that there are differences in the levels of distress associated with different types of unmet need, for example physical needs may be associated with lower levels of distress due to an anticipation of their presence in the cancer context . Although there is only a small literature on unmet care needs in haematological cancer samples (Swash et al, 2014), this body of evidence clearly indicates that unmet needs both exist and present considerable on-going challenges for good quality patient care and support (Hall et al, 2013). This is gaining increasing recognition in the UK, with assessment recommended as part of best practice care (Watson et al, 2012).…”

Section: Introductionmentioning

confidence: 99%

Unmet psychosocial supportive care needs and psychological distress in haematological cancer survivors: The moderating role of psychological flexibility

Swash

Bramwell

Hulbert‐Williams

2017

Journal of Contextual Behavioral Science

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BackgroundThe period immediately after the end of cancer treatment is a time when supportive care for the cancer patient decreases; this is known to increase risk of psychological distress and poor wellbeing.While there is broad recognition that unmet psychological and supportive care needs correlate with psychological wellbeing, little is understood about the factors that influence this relationship. This study explores the role of psychological flexibility, with a particular focus on its potential moderating role between unmet needs and psychological distress in haematological cancer survivors. Materials and MethodHaematological cancer survivors were recruited for this cross-sectional study through two major UK blood cancer charities. Participants (n=91) were all over the age of 16 and had been diagnosed with any sub-type of haematological cancer more than 18 months previously. Participants completed selfreport questionnaires assessing unmet psychological and supportive care needs (SCNS SF34), anxiety and depression (HADS), quality of life (EORTC QLQ-C30) and psychological flexibility (AAQ II). ResultsHigh levels of both unmet need and distress were present in the sample, indicating on-going care needs for these cancer survivors. Statistically significant correlations between unmet needs, psychological flexibility and all outcome variables (anxiety, depression, quality of life) were found.Using regression analysis based on Hayes' methodology (Hayes, 2013), psychological flexibility was found to act as a moderator between unmet need and distress in four out of 15 models; specifically, the statistical relationship between need and distress emerged only when levels of psychological flexibility were at average level or above. DiscussionHaematological cancer survivors have on-going supportive care needs that persist well beyond the end of active treatment. Unmet needs can, in turn, increase levels of anxiety and depression, and reduce quality of life in this patient group. The understanding offered by our data that psychological flexibility plays a moderating relationship between need and psychological distress creates opportunities for the development of theoretically-informed interventions to reduce both unmet need and distress in cancer patients. As such, these findings support the growing emphasis on Acceptance and Commitment based interventions for cancer patients.

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“…This is an interesting finding given that previous research has found that haematological cancer patients indicate talking to others who are going through a similar experience as a frequent unmet need [16, 17]. While patients may desire the ability to connect with others going through a similar experience, it is possible they do not perceive it to be a critical aspect of care.…”

Section: Discussionmentioning

confidence: 74%

Optimal cancer care: what essential elements of care would help haematological cancer patients obtain and understand information about their disease and its treatment and impact?

Bryant

Smits

Turon

et al. 2018

Support Care Cancer

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PurposeTo describe the perceptions of haematological cancer patients about the components of care deemed essential to supporting them to obtain and understand information about their cancer, its treatment and its impact on their life.MethodsA cross-sectional survey was conducted with individuals diagnosed with haematological cancer. Eligible patients presenting for a scheduled outpatient appointment were invited to complete a pen-and-paper survey in the clinic waiting room while waiting for their appointment. Those who completed the survey were mailed a second survey approximately 4 weeks later. Participants provided data about their demographic and disease characteristics and perceptions of optimal care for haematological cancer patients.ResultsA total of 170 patients completed both surveys and were included in the analysis. The items endorsed as essential components of care by the highest number of participants were being able to share accurate information about their disease, treatment and ongoing care with their GP/family doctor (49%); being able to obtain up-to-date information specific to their circumstances (43%); being able to obtain information in the amount of detail that they want (34%); being able to call a health care professional at the treatment centre where they are receiving care (34%) and being able to call an experienced health care professional who has knowledge of their disease and its treatment (34%).ConclusionsFurther research is needed to determine ways of meeting the preferences of haematological cancer patients and determining the associated impact on patient outcomes.

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Unmet needs of Australian and Canadian haematological cancer survivors: a cross‐sectional international comparative study

Abstract: Australian and Canadian haematological cancer survivors were found to experience similar levels of unmet needs. Overall, haematological cancer survivors may require additional assistance in dealing with feeling tired.

Cited by 49 publications

References 25 publications

The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties

The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties

Unmet psychosocial supportive care needs and psychological distress in haematological cancer survivors: The moderating role of psychological flexibility

Optimal cancer care: what essential elements of care would help haematological cancer patients obtain and understand information about their disease and its treatment and impact?

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