Multiple myeloma: The patient’s perspective

Vlossak, Donnaleen; Fitch, Margaret I.

doi:10.5737/1181912x183141145

Cited by 21 publications

(33 citation statements)

References 6 publications

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“…[1112] Information has been cited as a critical need by individuals at all points of the cancer journey. [4613] The evidence supports the idea that most, although not all, cancer patients want to be fully informed and receive as much information as possible.…”

Section: Introductionmentioning

confidence: 69%

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Perspectives from older adults receiving cancer treatment about the cancer-related information they receive

Fitch

McAndrew

Harth

2015

Asia-Pacific Journal of Oncology Nursing

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Objective:Cancer patients have reported that information plays a significant role in their capacity to cope with cancer and manage the consequences of treatment. This study was undertaken to identify the importance older adults receiving cancer treatment assign to selected types of cancer-related information, their satisfaction with the cancer-related information they received, and the barriers to effective information provision for this age group.Methods:This study was conducted in two phases with separate samples. Six hundred and eighty-four older cancer patients receiving treatment completed a standardized survey and 39 completed a semi-structured interview to gather perspectives about cancer-related information. Data were analyzed for 65-79 years and 80+ year groups.Results:Information topics about their medical condition, treatment options, and side effects of treatment were rated as most important by the older cancer patients. Women assigned a higher importance ratings than men to information overall (t = 4.8, P < 0.01). Although participants were generally satisfied with the information, they received many described challenges they experienced in communicating with health care professionals because of the medical language and fast pace of speaking used by the professionals.Conclusions:The older cancer patients in this study endorsed the same topics of cancer-related information as most important as has been reported in studies for other age groups. However, this older group recommended that, during their interactions with older individuals, health care professionals use fewer medical words, speak at a slower pace, and provide written information in addition to the actual conversation.

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Section: Introductionmentioning

confidence: 69%

“…[1] Individuals who have been diagnosed with this disease have indicated the importance of information, effective communication, and emotional support in helping them cope with these consequences. [23456] Given its importance, the provision of relevant, understandable information is considered a dimension of quality cancer care. [78]…”

Section: Introductionmentioning

confidence: 99%

Perspectives from older adults receiving cancer treatment about the cancer-related information they receive

Fitch

McAndrew

Harth

2015

Asia-Pacific Journal of Oncology Nursing

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“…Furthermore, for these patients, the added mystery and unknown nature of this cancer added to the stigma. In a study by Vlossak and Fitch (2008) most patients had never heard of myeloma before diagnosis. Moreover, less than 3% of the UK population have heard of myeloma (Myeloma UK 2006).…”

Section: Discussionmentioning

confidence: 99%

“…Dahan and Auerbach's (2006) grounded theory study explored the emotional effect of multiple myeloma among patients treated with peripheral blood stem cell transplant at a New York City cancer treatment centre. In addition, Vlossak and Fitch's (2008) qualitative study reported on in-depth telephone interviews with 20 patients receiving treatment for myeloma in a large regional cancer centre in Ontario, Canada.…”

Section: Literature Reviewmentioning

confidence: 99%

Patients’ lived experience of myeloma

Kelly¹,

Dowling²

2011

Nursing Standard

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“…There are some qualitative studies looking at the experience of myeloma from the patient’s perspective. These have explored lived experience [25-28], trauma and post-traumatic growth [29] and distress [30], but there is a paucity of qualitative research to directly characterise the meaning of QOL in this group [13]. …”

Section: Introductionmentioning

confidence: 99%

Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life

et al. 2014

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BackgroundMultiple myeloma is an incurable haematological cancer that affects physical, psychological and social domains of quality of life (QOL). Treatment decisions are increasingly guided by QOL issues, creating a need to monitor QOL within clinical practice. The development of myeloma-specific QOL questionnaires has been limited by a paucity of research to fully characterise QOL in this group. Aims of the present study are to (1) explore the issues important to QOL from the perspective of people with multiple myeloma, and (2) explore the views of patients and clinical staff on existing QOL questionnaires and their use in clinical practice.MethodsThe ‘Issues Interviews’ were semi-structured qualitative interviews to explore the issues important to QOL in a purposive sample of myeloma patients (n = 20). The ‘Questionnaire Interviews’ were semi-structured qualitative interviews in a separate purposive sample of myeloma patients (n = 20) to explore views on existing QOL questionnaires and their clinical use. Two patient focus groups (n = 7, n = 4) and a focus group of clinical staff (n = 6) complemented the semi-structured interviews. Thematic content analysis resulted in the development of a theoretical model of QOL in myeloma.ResultsMain themes important to QOL were Biological Status, Treatment Factors, Symptoms Status, Activity & Participation, Emotional Status, Support Factors, Expectations, Adaptation & Coping and Spirituality. Symptoms had an indirect effect on QOL, only affecting overall QOL if they impacted upon Activity & Participation, Emotional Status or Support Factors. This indirect relationship has implications for the design of QOL questionnaires, which often focus on symptom status. Health-service factors emerged as important but are often absent from QOL questionnaires. Sexual function was important to patients and difficult for clinicians to discuss, so inclusion in clinical QOL tools may flag hidden problems and facilitate better care. Patients and staff expressed preferences for questionnaires to be no more than 2 pages long and to include a mixture of structured and open questions to focus the goals of care on what is most important to patients.ConclusionExisting QOL questionnaires developed and validated for use in myeloma do not capture all that is important to patients and may not be well suited to clinical use.

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Multiple myeloma: The patient’s perspective

Abstract: Abstract

Cited by 21 publications

References 6 publications

Perspectives from older adults receiving cancer treatment about the cancer-related information they receive

Perspectives from older adults receiving cancer treatment about the cancer-related information they receive

Patients’ lived experience of myeloma

Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life

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