Dataset Information

Living with leg lymphedema: developing a novel model of quality lymphedema care for cancer survivors.

ABSTRACT:

Purpose

Lower-extremity lymphedema (LEL) is a lifelong consequence of cancer therapy and can lead to serious physical and psychosocial complications for many cancer survivors. However, clinical knowledge and treatment of LEL remain minimal. The purpose of this study was to integrate perspectives of lymphedema patients and healthcare providers (HCPs) on LEL to develop a novel model for quality lymphedema care.

Methods

A mixed-methods approach was implemented. Standardized questionnaires and semi-structured interviews were used to assess psychosocial well-being and experiences of LEL patients. Interviews were also used to evaluate the clinical experiences of HCPs working within tumour groups associated with cancer-related LEL. Thematic analysis was used to analyse qualitative data.

Results

Twenty-two patients and eleven HCPs participated in this study. Patient QOL, generalized anxiety and depressive symptom scores revealed a complex interplay between psychosocial well-being and supportive LEL care after cancer. Three themes emerged from interviews with patients (n?=?19) and HCPs (n?=?11): level of lymphedema knowledge, effectiveness of rehabilitation oncology services and barriers to care.

Implications for cancer survivors

We developed a novel model for quality lymphedema care that emphasizes the importance of continued physical and psychosocial support for LEL patients, while illustrating the importance of HCPs in facilitating a smooth transition for patients to LEL care after cancer treatment.

SUBMITTER: Bowman C

PROVIDER: S-EPMC7822774 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

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Publications

Living with leg lymphedema: developing a novel model of quality lymphedema care for cancer survivors.

Bowman Catharine C Oberoi Devesh D Radke Lori L Francis George J GJ Carlson Linda E LE

Journal of cancer survivorship : research and practice 20200726 1

<h4>Purpose</h4>Lower-extremity lymphedema (LEL) is a lifelong consequence of cancer therapy and can lead to serious physical and psychosocial complications for many cancer survivors. However, clinical knowledge and treatment of LEL remain minimal. The purpose of this study was to integrate perspectives of lymphedema patients and healthcare providers (HCPs) on LEL to develop a novel model for quality lymphedema care.<h4>Methods</h4>A mixed-methods approach was implemented. Standardized questionn ...[more]

PMID: 32712757

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Project description:BACKGROUND:Head and neck cancer (HNC) patients are at high risk for developing lymphedema and fibrosis (LEF) following cancer treatment. Once HNC patients develop LEF, they need to conduct life-long self-care to slow LEF progression and reduce associated symptom burden and functional deficits. Data demonstrate that inadequate LEF self-care may be a potentially remediable issue. The objective of this study is to explore the feasibility and preliminary efficacy of an Information-Motivation-Behavioral (IMB) Skills model-driven self-care program (SCP) to improve LEF management and reduce LEF-related symptom burden and functional impairments. METHODS/DESIGN:This is a three-arm, prospective, randomized controlled clinical trial to compare: Group 1 - Usual Care, Group 2 - Usual Care Plus LEF-SCP, and Group 3 - Usual Care Plus LEF-SCP Plus Follow-Up. Participants will be HNC survivors aged > 18 years of age, who meet predefined inclusion and exclusion criteria. A sample size of 75 participants is targeted. Interventions will be provided by trained staff. The study assessments for all groups will take place at five points: study entry then 3, 6, 9, and 12 months post enrollment. Outcome measures include: (1) feasibility (barriers to implementation, safety, and satisfaction) of the proposed intervention; (2) self-efficacy and adherence to self-care; and (3) preliminary efficacy (LEF progression, symptom burden, and functional status) of the proposed intervention. DISCUSSION:This will be the first study to evaluate the feasibility of a LEF-SCP in the HNC population and its impact on self-efficacy and adherence. Furthermore, it will evaluate the potential benefit of routine follow-up on adherence and fidelity to the self-care protocol. We expect that the trial will provide evidence supporting the feasibility of a LEF self-care program. In addition, we anticipate that preliminary data will support improved outcomes including increased adherence and fidelity, and decreased LEF-associated symptoms. TRIAL REGISTRATION:ClinicalTrials.gov, a service of the US National Institute of Health (NCT03030859). Registered on 22 January 2017.

Dataset Information

Living with leg lymphedema: developing a novel model of quality lymphedema care for cancer survivors.

Purpose

Methods

Results

Implications for cancer survivors

Publications

Living with leg lymphedema: developing a novel model of quality lymphedema care for cancer survivors.

Similar Datasets

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