‘Haematological cancers, they’re a funny bunch’: A qualitative study of non-Hodgkin’s lymphoma patient experiences of unmet supportive care needs

Despite high levels of psychological distress, there is a scarcity of research on unmet supportive care needs in haematological cancer patients. This qualitative study used an in-depth interpretative phenomenological approach to investigate the needs reported by six non-Hodgkin’s lymphoma patients and explored how these needs consequently shaped the patient experience. Emergent themes included the following: concerns for family, information needs and the need for psychological support. Participants reported feeling different to other cancer patients. Lack of understanding of their diagnosis by friends and family and lack of access to relevant support services are notable unmet needs that differ from previous findings.

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Coping with non-Hodgkin’s lymphoma: a qualitative study of patient perceptions and supportive care needs whilst undergoing chemotherapy

Supportive Care in Cancer ◽

10.1007/s00520-017-3649-0 ◽

2017 ◽

Vol 25 (8) ◽

pp. 2429-2435 ◽

Cited By ~ 4

Author(s):

Daren Chircop ◽

Josianne Scerri

Keyword(s):

Qualitative Study ◽

Supportive Care ◽

Hodgkin’S Lymphoma ◽

Patient Perceptions ◽

Supportive Care Needs ◽

Hodgkin's Lymphoma ◽

Care Needs ◽

Non Hodgkin’S Lymphoma ◽

Non Hodgkin's Lymphoma

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A qualitative approach in determining the patient-centered information and supportive care needs of cancer patients in Singapore

BMJ Open ◽

10.1136/bmjopen-2019-034178 ◽

2020 ◽

Vol 10 (2) ◽

pp. e034178

Author(s):

Gek Phin Chua ◽

Hiang Khoon Tan

Keyword(s):

Supportive Care ◽

Cancer Patients ◽

Quantitative Study ◽

Information Needs ◽

Supportive Care Needs ◽

Research Approach ◽

Detailed Knowledge ◽

Care Needs ◽

Treatment Unit ◽

Ambulatory Treatment

ObjectivesTo qualitatively interpret the information and supportive care needs perceived by cancer patients undergoing treatment in order to get a deeper appreciation of patients’ needs and concerns. The intended outcome is to provide baseline knowledge for improving patient-centred strategies to better meet the information and supportive needs of patients.DesignA qualitative research approach, based on conventional content analysis, was used throughout the research process. The three open-ended questions obtained from a previous quantitative study guided the researchers to explore the information and supportive care needs of patients. Data from patients’ responses were analysed and coded in themes.Participants and settingPatients attending the Ambulatory Treatment Unit of the National Cancer Centre Singapore were invited to participate in the study. We determined from these subjects the type of information that cancer patients need, and to measure the extent to which these information needs are met by measuring patients’ level of satisfaction. Included in the quantitative study were three open-ended questions designed to gain a deeper understanding of their needs and concerns. All subjects were aged 21 years and above and able to understand and communicate in English/Mandarin. They were also aware of their diagnosis, they were not cognitively impaired and were not at the end-of-life situation.ResultsA variety of information and supportive care needs were identified, and three specific areas of concerns were identified: (1) psychosocial and supportive care needs, (2) information needs and (3) information delivery by professionals.ConclusionThe information and supportive care needs expressed were consistent with issues of cancer patients undergoing treatment. The strategies to improve patients’ coping abilities through patient-centred care are discussed. Further studies assessing the barriers of information provision by healthcare professionals should provide more detailed knowledge about unmet information needs.

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Risk Factors for Venous Thromboembolism (VTE) among Patients with Active Hematological Cancer: A Population-Based Case-Control Study.

Blood ◽

10.1182/blood.v110.11.1642.1642 ◽

2007 ◽

Vol 110 (11) ◽

pp. 1642-1642

Author(s):

Aneel A. Ashrani ◽

John A. Heit ◽

Jeffrey A. Schmoll ◽

Sara A. Farmer ◽

Tanya M. Petterson ◽

...

Keyword(s):

Risk Factors ◽

Acute Leukemia ◽

Cancer Patients ◽

Hodgkin’S Lymphoma ◽

Hodgkin's Lymphoma ◽

Cancer Type ◽

Hematological Cancer ◽

Stage Progression ◽

Non Hodgkin’S Lymphoma ◽

Non Hodgkin's Lymphoma

Abstract Background: Hematological cancer patients are at an increased risk for VTE (RR range = 12–32). However, whether VTE risk among such patients can be further stratified is uncertain. Objective: To test hematological cancer type, stage, stage progression and chemotherapy as potential risk factors for VTE among active hematological cancer patients after controlling for other previously-identified VTE risk factors. Methods: Using the resources of the Rochester Epidemiology Project, Mayo Clinic Master Diagnostic Index and Mayo Clinic Tumor Registry, we identified all Olmsted County, MN residents with active hematological cancer over the 28-year period, 1973–2000. From this prevalence cohort, we identified 86 patients with no prior VTE (controls) who were matched on age and date of hematological cancer diagnosis to 86 hematological cancer patients with incident VTE over the same time frame (cases). For all cases and controls, we reviewed the complete medical records in the community for baseline and hematological cancer-related characteristics. Hematological cancers were re-staged at the dates of the cancer and VTE diagnosis. We tested these characteristics as potential risk factors for VTE in active hematological cancer using conditional logistic regression. Results: In an initial multivariate analysis that included body mass index (BMI), hospitalization, and any infection or central venous catheter placement within 90 days prior to the VTE event, VTE was significantly associated with hospitalization (OR=6.70; p<0.001), and marginally associated with any infection (OR=2.18; p=0.09). After adjusting for the above variables, chemotherapy administered within the preceding 90 days was significantly associated with VTE (OR=4.25; p=0.02), while stage progression was marginally associated (OR=4.79; p=0.10). Compared to all other hematological cancer types, acute leukemia (OR=5.95; p=0.01) and non-Hodgkin’s lymphoma (OR=2.61; p=0.01) were associated with VTE. However, after adjusting for BMI, hospitalization, any infection and central venous catheter, only non-Hodgkin’s lymphoma was independently associated with VTE (OR=3.79, p=0.009), while acute leukemia was not (OR=2.66, p=0.35). Conclusions: Hematological cancer type (in particular, non-Hodgkin’s lymphoma and possibly acute leukemia), recent hospitalization, recent chemotherapy, and possibly stage progression and recent infection, are risk factors for VTE among patients with active hematological cancer.

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Unmet supportive care needs and associated factors among young adult cancer patients in Japan

BMC Cancer ◽

10.1186/s12885-020-07721-4 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Masako Okamura ◽

Maiko Fujimori ◽

Ayako Sato ◽

Yosuke Uchitomi

Keyword(s):

Young Adult ◽

Supportive Care ◽

Cancer Patients ◽

Associated Factors ◽

Information Needs ◽

Unmet Needs ◽

Psychological Needs ◽

Supportive Care Needs ◽

Care Needs ◽

Young Adult Cancer

Abstract Background Young adult cancer patients often face unique challenges and have potential unmet needs. This study aimed (1) to describe unmet supportive care needs among young adults with cancer in Japan, and (2) to identify its associated factors. Methods In a cross-sectional web-based survey, 206 young adults with cancer were assessed for supportive care needs. Multiple regression analysis examined whether demographics, clinical variables and social support were associated with unmet supportive care needs. Results A total of 206 patients (180 female) with a mean age of 33.7 years (SD = 4.3, range: 22–39) participated. One hundred and fifty-eight participants (76.7%) reported at least one unmet supportive care needs. The top 20 unmet needs included 9 of the 10 psychological needs, 3 of the 5 physical and daily living needs, 8 of the 11 health system and information needs and 1 of the 5 sexuality needs. Multiple regression analysis revealed that perceived poorer PS, experience of change in work/school after a cancer diagnosis and poor social support were significantly associated with higher supportive care needs. The total score of supportive care needs was significantly associated with both psychological distress and QOL. Conclusions More than 70% of young adult cancer patients reported unmet supportive care needs and most of those were psychological needs. The findings suggest potential opportunities for intervention in addressing psychological needs rather than physical and information needs.

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Is There a Difference in Unmet Supportive Care Needs Between Older and Younger Outpatients Receiving Chemotherapy?

Journal of Palliative Care ◽

10.1177/08258597211044248 ◽

2021 ◽

pp. 082585972110442

Author(s):

İrem Ayvat ◽

Azize Atli Ozbas

Keyword(s):

Supportive Care ◽

Cancer Patients ◽

Older Patients ◽

Information Needs ◽

Supportive Care Needs ◽

Cancer Type ◽

Care Needs ◽

Treatment Unit ◽

Younger Patients ◽

Age Related

Objective: This study investigated whether there was a difference in unmet supportive care needs between older and younger cancer patients who receive chemotherapy. Background: Physiological, physical, cognitive, and social functions, which play a key role in coping with cancer, are impaired due to aging. Age-related physiological changes and psychosocial factors and comorbid medical conditions make some of the needs of older cancer patients unique and complex. At the heart of meeting these needs lies the concept of supportive care. First step of meeting their needs is to determine these needs. Study Design and Methods: The study was conducted in the Daytime Treatment Unit of the oncology hospital of a university in Ankara, Turkey. The study sample consisted of 93 patients aged 65 years or older and 93 patients under 65 years of age. Both groups were similar in terms of sex, cancer type, and chemotherapy protocols. Data were collected using a Patient Information Form and Supportive Care Needs Scale-Short Turkish Version and analyzed using descriptive statistics, Mann–Whitney U test, Kruskal–Wallis H test, and Bonferroni correction. Results: Participants had a median total score of 1.92. Their “daily life needs” and “sexuality needs” subscale scores were highest and lowest, respectively. Older patients had lower median total scores than younger patients. Younger patients had higher median “health care and information needs” and “sexuality needs” subscale scores than older patients. Conclusion: Elderly patients reported fewer unmet needs than younger patients. This may be due to age-related cultural factors as they may have difficulty expressing their needs. Implications: Results suggest to focus on the fact that patients' needs change with age and that they have difficulty expressing their needs.

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The prevalence and nature of supportive care needs in lung cancer patients

Current Oncology ◽

10.3747/co.23.3012 ◽

2016 ◽

Vol 23 (4) ◽

pp. 258 ◽

Cited By ~ 20

Author(s):

M.E. Giuliani ◽

R.A. Milne ◽

M. Puts ◽

L.R. Sampson ◽

J.Y.Y. Kwan ◽

...

Keyword(s):

Lung Cancer ◽

Supportive Care ◽

Cancer Patients ◽

Information Needs ◽

Unmet Needs ◽

Short Form ◽

Multivariable Analysis ◽

Supportive Care Needs ◽

Care Needs ◽

Lung Cancer Patients

PurposeIn the present work, we set out to comprehensively describe the unmet supportive care and information needs of lung cancer patients.Methods This cross-sectional study used the Supportive Care Needs Survey Short Form 34 (34 items) and an informational needs survey (8 items). Patients with primary lung cancer in any phase of survivorship were included. Demographic data and treatment details were collected from the medical charts of participants. The unmet needs were determined overall and by domain. Univariable and multivariable regression analyses were performed to determine factors associated with greater unmet needs.Results From August 2013 to February 2014, 89 patients [44 (49%) men; median age: 71 years (range: 44–89 years)] were recruited. The mean number of unmet needs was 8 (range: 0–34), and 69 patients (78%) reported at least 1 unmet need. The need proportions by domain were 52% health system and information, 66% psychological, 58% physical, 24% patient care, and 20% sexuality. The top 2 unmet needs were “fears of the cancer spreading” [n = 44 of 84 (52%)] and “lack of energy/tiredness” [n = 42 of 88 (48%)]. On multivariable analysis, more advanced disease and higher MD Anderson Symptom Inventory scores were associated with increased unmet needs. Patients reported that the most desired information needs were those for information on managing symptoms such as fatigue (78%), shortness of breath (77%), and cough (63%).Conclusions Unmet supportive care needs are common in lung cancer patients, with some patients experiencing a very high number of unmet needs. Further work is needed to develop resources to address those needs.

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Use of supportive care and risk of febrile neutropenia (FN) among patients receiving myelosuppressive chemotherapy for solid tumors or non-Hodgkin's lymphoma (NHL) at four US health systems.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.15_suppl.e18756 ◽

2018 ◽

Vol 36 (15_suppl) ◽

pp. e18756-e18756

Author(s):

Derek Weycker ◽

Amanda Silvia ◽

Erinda Shyta ◽

Kathryn E. Richert-Boe ◽

Mark Bensink ◽

...

Keyword(s):

Febrile Neutropenia ◽

Supportive Care ◽

Solid Tumors ◽

Health Systems ◽

Hodgkin’S Lymphoma ◽

Hodgkin's Lymphoma ◽

Myelosuppressive Chemotherapy ◽

Non Hodgkin’S Lymphoma ◽

Non Hodgkin's Lymphoma

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Unmet supportive care needs and associated factors among young adult cancer patients in Japan

10.21203/rs.2.22046/v3 ◽

2020 ◽

Author(s):

Masako Okamura ◽

Maiko Fujimori ◽

Ayako Sato ◽

Yosuke Uchitomi

Keyword(s):

Young Adult ◽

Supportive Care ◽

Cancer Patients ◽

Associated Factors ◽

Information Needs ◽

Unmet Needs ◽

Psychological Needs ◽

Supportive Care Needs ◽

Care Needs ◽

Young Adult Cancer

Abstract Background: Young adult cancer patients often face unique challenges and have potential unmet needs. This study aimed (1) to describe unmet supportive care needs among young adults with cancer in Japan, and (2) to identify its associated factors.Methods: In a cross-sectional web-based survey, 206 young adults with cancer were assessed for supportive care needs. Multiple regression analysis examined whether demographics, clinical variables and social support were associated with unmet supportive care needs.Results: A total of 206 patients (180 female) with a mean age of 33.7 years (SD=4.3, range: 22-39) participated. One hundred and fifty-eight participants (76.7%) reported at least one unmet supportive care needs. The top 20 unmet needs included 9 of the 10 psychological needs, 3 of the 5 physical and daily living needs, 8 of the 11 health system and information needs and 1 of the 5 sexuality needs. Multiple regression analysis revealed that perceived poorer PS, experience of change in work/school after a cancer diagnosis and poor social support were significantly associated with higher supportive care needs. The total score of supportive care needs was significantly associated with both psychological distress and QOL.Conclusions: More than 70% of young adult cancer patients reported unmet supportive care needs and most of those were psychological needs. The findings suggest potential opportunities for intervention in addressing psychological needs rather than physical and information needs.

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