Unmet needs of family cancer caregivers predict quality of life in long-term cancer survivorship

Introduction Detailed data on the long-term consequences and treatment of stroke are scarce. We aimed to assess the needs and disease burden of community-dwelling stroke patients and their carers and to compare their treatment to evidence-based guidelines by a stroke neurologist. Methods We invited long-term stroke patients from two previous acute clinical studies ( n = 516) in Berlin, Germany to participate in an observational, cross-sectional study. Participants underwent a comprehensive interview and examination using the Post-Stroke Checklist and validated standard measures of: self-reported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden. Results Fifty-seven participants (median initial National Institutes of Health Stroke Scale score 10 interquartile range 4–12.75) consented to assessment (median 41 months (interquartile range 36–50) after stroke. Modified Rankin Scale was 2 (median; interquartile range 1–3), EuroQoL index value was 0.81 (median; interquartile range 0.70–1.00). The frequencies for disabilities in the major domains were: spasticity 35%; cognition 61%; depression 20%; medication non-compliance 14%. Spasticity ( p = 0.008) and social needs ( p < 0.001) had the strongest impact on quality of life. The corresponding items in the Post-Stroke Checklist were predictive for low mood ( p < 0.001), impaired cognition ( p = 0.015), social needs ( p = 0.005) and caregiver burden ( p = 0.031). In the comprehensive interview, we identified the following needs: medical review (30%), optimization of pharmacotherapy (18%), outpatient therapy (47%) and social work input (33%). Conclusion These results suggest significant unmet needs and gaps in health and social care in long-term stroke patients. Further research to develop a comprehensive model for managing stroke aftercare is warranted. Clinical Trial Registration: clinicaltrials.gov NCT02320994.

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Is health-related quality of life between 90 and 180 days following stroke associated with long-term unmet needs?

Quality of Life Research ◽

10.1007/s11136-016-1234-5 ◽

2016 ◽

Vol 25 (8) ◽

pp. 2053-2062 ◽

Cited By ~ 5

Author(s):

N. E. Andrew ◽

M. F. Kilkenny ◽

N. A. Lannin ◽

D. A. Cadilhac

Keyword(s):

Quality Of Life ◽

Unmet Needs ◽

Health Related Quality ◽

Related Quality ◽

Health Related

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Concerns and Quality of Life of Cancer Survivors Across the Survivorship Trajectory: A Singapore Perspective

10.21203/rs.2.14780/v1 ◽

2019 ◽

Author(s):

Gek Phin Chua ◽

Quan Sing Ng ◽

Hiang Khoon Tan ◽

Whee Sze Ong

Keyword(s):

Quality Of Life ◽

Cancer Survivors ◽

Cancer Treatment ◽

Cancer Survivorship ◽

Recurrence Risk ◽

Term Treatment ◽

Fear Of Recurrence ◽

Long Term Treatment

Abstract Background The aim of this study is to determine the main concerns of survivors at various stages of the cancer survivorship of the cancer survivorship trajectory and to assess whether these concerns have any effect on their quality of life (QOL). The overall goal was to use the insights from the study to guide practice on patient care. Methods A cross-sectional survey of 1107 cancer survivors diagnosed with colorectal, breast, lung, gynaecological, prostate or liver cancers from a cancer centre in Singapore. Eligible patients self-completed a questionnaire adapted from the Mayo Clinic Cancer Centre’s Cancer Survivors Survey of Needs. Results The top 5 concerns among all survivors were cancer treatment and recurrence risk (51%), followed by long-term treatment effects (49%), fear of recurrence (47%), financial concerns (37%) and fatigue (37%). Cancer treatment and recurrence risk, long-term treatment effects and fear of recurrence were amongst the top concerns across the survivorship trajectory. Mean QOL was 7.3 on a scale of 0 – 10. Completed treatment patients had higher QOL score than the newly diagnosed and on treatment patients and the patients dealing with recurrence or second cancer patients. Predictors for QOL included the economic status and housing type of patients and whether patients were concerned with pain and fatigue Conclusion This study confirms that cancer survivors in Singapore face multiple challenges and had various concerns at various stages of cancer survivorship, some of which negatively affect their QOL It is critical to design patient care delivery that appropriately address the various concerns of cancer survivors in order for them to cope and improve their QOL.

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QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

Neuro-Oncology ◽

10.1093/neuonc/noab196.750 ◽

2021 ◽

Vol 23 (Supplement_6) ◽

pp. vi189-vi189

Author(s):

Emma Nicklin ◽

Galina Velikova ◽

Adam Glaser ◽

Michelle Kwok-WIlliam ◽

Miguel Debono ◽

...

Keyword(s):

Quality Of Life ◽

Supportive Care ◽

Brain Tumour ◽

Unmet Needs ◽

Supportive Care Needs ◽

Care Needs ◽

Long Term Follow Up

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

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Unmet Medical Needs in the Management of Ulcerative Colitis: Results of an Italian Delphi Consensus

Gastroenterology Research and Practice ◽

10.1155/2019/3108025 ◽

2019 ◽

Vol 2019 ◽

pp. 1-9 ◽

Cited By ~ 3

Author(s):

Marco Daperno ◽

Alessandro Armuzzi ◽

Silvio Danese ◽

Walter Fries ◽

Giuseppina Liguori ◽

...

Keyword(s):

Quality Of Life ◽

Ulcerative Colitis ◽

Unmet Needs ◽

Clinical Symptoms ◽

Negative Impact ◽

Delphi Process ◽

Delphi Consensus ◽

Medical Needs

Background. The lifelong and remitting nature of ulcerative colitis results in considerable disability and a substantial negative impact on quality of life. The major goal of the therapy of ulcerative colitis is considered to be the modification of the course of the disease, so that the patient’s quality of life can be improved while minimising disease-related disability. Although considerable progress in understanding the molecular pathways involved in ulcerative colitis has led to improved treatment options, there is currently no definitive cure for ulcerative colitis, there remain considerable unmet needs in terms of long-term efficacy and safety, and there are many patients who continue to be burdened by physical and psychological symptoms. Defining unmet needs can help to increase the awareness of the shortcomings of current therapeutic management and highlight the need to achieve not only a control of clinical symptoms but also control of mucosal healing, in order to attain the best possible long-term outcomes. Methods. With the aim of providing a better understanding of the unmet needs of patients towards improving overall care, a Delphi process was used to obtain consensus among a group of Italian ulcerative colitis experts. The consensus group met with a major focus of delineating the unmet needs of current treatment strategies and overall management of ulcerative colitis, while also focusing on quality of life and patient care. Results. Three main areas were identified: (i) treatment, (ii) monitoring and risk management, and (iii) patient-related issues. A high level of consensus was reached on all but one of the statements identified. Conclusions. The findings arising from the Delphi process provide valuable insights into the unmet needs in the management of moderate-to-severe ulcerative colitis from the clinician’s perspective, while emphasising the benefits of therapeutic individualization and suggesting areas that need additional study with the aim of optimising the treatment of patients with ulcerative colitis.

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Bereaved Family Cancer Caregivers’ Unmet Needs: Measure Development and Validation

Annals of Behavioral Medicine ◽

10.1093/abm/kaz036 ◽

2019 ◽

Vol 54 (3) ◽

pp. 164-175

Author(s):

Youngmee Kim ◽

Charles S Carver ◽

Rachel S Cannady

Keyword(s):

Quality Of Life ◽

Needs Assessment ◽

Family Caregivers ◽

Unmet Needs ◽

Strong Predictor ◽

Extended Period ◽

Index Patient ◽

Cancer Caregivers ◽

Bereaved Family

Abstract Purpose/Background Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers’ quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers. Method The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed. Results Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers’ needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics. Conclusion Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.

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Longitudinal trajectory of cancer survivorship in patients with recurrent rectal cancer: Anatomy of recurrence in relation to quality of life and pain.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.4_suppl.679 ◽

2017 ◽

Vol 35 (4_suppl) ◽

pp. 679-679

Author(s):

Tarik Sammour ◽

Songphol Malakorn ◽

George J. Chang ◽

Miguel A. Rodriguez-Bigas ◽

Brian Bednarski ◽

...

Keyword(s):

Quality Of Life ◽

Rectal Cancer ◽

Cancer Survivorship ◽

Recurrent Rectal Cancer ◽

Pain Scores ◽

Patient Reported ◽

Eortc Qlq ◽

Surgical Salvage

679 Background: Multiple treatment modalities are utilized for patients with recurrent rectal cancer (RRC). While recurrent pelvic tumor can be highly symptomatic, treatments often carry significant morbidity risks. Patient reported outcomes such as quality of life (QoL) and pain can supplement traditional clinical endpoints in assessing the effectiveness of salvage treatments, and thus aid in treatment decision making. We aimed to examine the longitudinal trajectory of cancer survivorship in RRC. Methods: A prospective protocol enrolled patients diagnosed with RRC between 2008 and 2015. Participants prospectively self-reported QoL (measured by the validated EORTC QLQ-C30 and EORTC QLQ-CR29) and pain (measured by the Brief Pain Inventory, BPI), at presentation, and then every 6 months for 5 years. After accounting for repeated measures, trajectory of mean scores over time was assessed for patients amenable to surgical salvage vs those who were not, using linear mixed-effects modeling. Results: A total of 104 patients were enrolled of which 73 (70.2%) were amenable to salvage surgery with curative intent. Surgical salvage was associated with 30 day morbidity of 68.5% (13.7% and 5.5%, Grade 3 and 4 respectively). Three year overall survival was 56.7% (68.5% in surgical and 29.0% in non-surgical patients). Mean baseline QoL scores did not differ between surgical vs nonsurgical patients but were significantly impacted by the anatomical site of recurrent disease (lowest scores in posterior pelvic recurrence; P=0.012). On longitudinal analysis with a median followup of 33 months, surgically salvaged patients showed gradual sustained improvement in QoL but not pain scores. Anatomy of initial recurrence had an ongoing impact on QoL long term with posterior recurrences having the worst scores. Both QoL and pain scores worsened in patients not amendable to surgical salvage. Conclusions: Disease anatomy determines QoL at baseline and long term in patients with RRC. Surgery improves QoL but not pain in selected resectable cases.

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Social support and unmet social needs in life after stroke: a cross-sectional observational study

10.21203/rs.2.9386/v1 ◽

2019 ◽

Author(s):

Sophie Mirabell Lehnerer ◽

Benjamin Hotter ◽

Inken Padberg ◽

Petra Knispel ◽

Dike Remstedt ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Caregiver Burden ◽

Unmet Needs ◽

Social Needs ◽

Stroke Patients ◽

Cross Sectional ◽

Degree Of Disability

Abstract Background: Stroke patients are often affected by long-term disabilities with needs concerning social issues. There is relatively little consideration of social recovery of patients and the support required to return to work, receive social benefits, participate in daily life activities, maintain contact with family and friends and to organize financial affairs. In our study we aimed to investigate if existing tools record social needs adequately. We analyzed the current provision of social support provided in long-term care after stroke and whether unmet social needs were associated with quality of life, caregiver burden, overall function and degree of disability. Methods: Our analysis is part of the Managing Aftercare of Stroke study (MAS-I), a cross-sectional observational study of patient needs 2-3 years after initial stroke. Assessment tools included the Nikolaus-score (social situation), the EuroQoL (quality of life), the German Burden Scale for Family Caregivers (caregiver burden), the modified Rankin Scale (disability / dependence), Stroke Impact Scale (function and degree of disability) and the Stroke Survivor Needs Questionnaire (unmet needs). Results: Overall 57 patients were included in MAS-I, with ten patients classified in urgent need of socio-economic support according to the Nikolaus-score. Patients with lower than normal Nikolaus-score had a higher degree of disability. Thirty percent of all patients had never received professional social support. Social worker contact happened mostly during the stay in acute hospital or rehabilitation institution. Only four patients (11%) reported long-term support after discharge. Apart from social worker contact during acute care, 43% of patients had unmet needs in the long-term aftercare. Forty percent of all patients included in MAS-I were recommended for social work intervention after an in-depth analysis of their situation. Finally, we saw that unmet social needs were associated with lower quality of life and higher caregiver burden. Conclusions: Our data suggest significant unmet needs in social care in long-term stroke patients. Screening tools for unmet social needs such as the Nikolaus-score do not holistically report patients’ needs.

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The caregiver perspective: Advancing the understanding of cancer caregiving in the palliative care setting.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.34_suppl.17 ◽

2018 ◽

Vol 36 (34_suppl) ◽

pp. 17-17 ◽

Cited By ~ 1

Author(s):

Martha Raymond ◽

Margaret-Ann Simonetta

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Focus Groups ◽

Care Setting ◽

Unmet Needs ◽

Supportive Services ◽

Caregiver Support ◽

Palliative Care Setting ◽

Cancer Caregivers

17 Background: 2018 data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) Program estimates there are 15.5 million cancer survivors in the U.S. Throughout the care continuum, cancer caregivers provide invaluable support which greatly impacts and improves patient quality of life. In the palliative care setting caregiver support is vitally important, but many caregivers struggle to take care of their own needs and are not aware of supportive services. Our study explores the unmet needs of cancer caregivers in the palliative care setting. Methods: Over a two-year time period (2015-2017), our professional facilitator met with cancer caregivers in 32 states hosting nationwide focus groups. Primary goals were reaching caregivers in rural, urban, medically underserved, and community oncology settings to gain perspective from diverse populations. Focus groups were held in person and online via facetime conferencing. Results: 778 caregivers (42% male, 58% female) participated. 92% of caregivers did not feel comfortable defining palliative care nor did they realize the various supportive elements palliative care provides. 76% were extremely anxious during care transitions; 71% feel overwhelmed with daily caregiving tasks; 69% want to help make end of life decisions including advance directives in partnership with their loved one, but did not feel equipped to make tough decisions; 64% report lack of patient/caregiver centered communication with their healthcare team, including guidance on adverse effects and training for medical hands-on tasks. Conclusions: Caregivers in the palliative care setting need additional supportive services, effective interventions, and educational programs to meet their unmet needs. With additional support and awareness, enhanced quality of life for both caregiver and patient is possible. Our conversations with caregivers will continue as we increase palliative care awareness, collaborate with partners, develop meaningful programs, and expand our outreach to help meet the needs of caregivers in the palliative care setting.

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Impact of informal cancer caregiving across the cancer experience: A systematic literature review of quality of life

Palliative & Supportive Care ◽

10.1017/s1478951519000622 ◽

2019 ◽

Vol 18 (2) ◽

pp. 220-240 ◽

Cited By ~ 4

Author(s):

Carol Y. Ochoa ◽

Natasha Buchanan Lunsford ◽

Judith Lee Smith

Keyword(s):

Quality Of Life ◽

Literature Review ◽

Systematic Literature Review ◽

Active Treatment ◽

Financial Burden ◽

The United States ◽

Original Research ◽

Cancer Caregivers

AbstractObjectiveInformal caregiving may likely increase as the number of cancer survivors grows. Caregiving responsibilities can impact caregivers’ quality of life (QOL). Understanding the current state of the science regarding caregiving QOL could help inform future research and intervention development.MethodsA systematic literature review in PubMed/Medline examined research on QOL among informal cancer caregivers and related psychosocial health outcomes. Original research articles in English, published between 2007 and 2017 about caregivers (aged >18 years) of adult cancer patients in the United States were included. Abstracted articles were categorized according to caregiving recipient's phase of survivorship (acute, middle to long-term, end of life/bereavement).ResultsOf 920 articles abstracted, 60 met inclusion criteria. Mean caregiver age ranged from 37 to 68 with the majority being female, non-Hispanic white, with at least a high school degree, and middle income. Almost half of the studies focused on caregivers who provided care for survivors from diagnosis through the end of active treatment. Studies examined physical health, spirituality, psychological distress, and social support. Differences in QOL were noted by caregiver age, sex, and employment status.Significance of ResultsAdditional research includes the examination of the needs of diverse cancer caregivers and determines how additional caregiver characteristics (e.g., physical functioning, financial burden, etc.) affect QOL. This includes studies examining caregiver QOL in the phases following the cessation of active treatment and assessments of health systems, support services, and insurance to determine barriers and facilitators needed to meet the immediate and long-term needs of cancer caregivers.

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