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Quality of life in adult individuals living with or at risk of a hereditary cancer predisposition syndrome: a scoping review of the qualitative literature
No full textBackgroundThe in-depth understanding of the impact of a hereditary cancer predisposition syndrome (HCPS) on the health-related quality of life (HRQOL) of individuals with a hereditary cancer burden contributes to the improvement of counselling strategies as well as care planning and informs the development of patient-reported outcome measures (PROMs) for standardised HRQOL assessment. This is the first review to systematically identify and synthesise the evidence from qualitative literature on HRQOL issues relevant for adult individuals living with (the risk of) HCPS between 1991 and 2024.MethodsEligible studies were qualitative studies of adult individuals' experiences, including direct quotes and studies on the development or validation of health outcome measures. The literature was searched from 1991 to 2024 using the databases PubMed, CINAHL, Embase, and PsycINFO.ResultsWe screened 13,410 references for study inclusion by title and abstract, resulting in the retrieval of 606 full papers. More than 6800 qualitative patient quotes were extracted and coded by four raters. Reviewed literature provided a comprehensive picture of the experience of individuals living with (the risk of) HCPS in nine identified HRQOL domains (decision-making, impact on family and social relationships, emotional response to test result, living with HCPS, perspective on life and self, HCPS-related symptoms, taking measures to prevent the development or progression of cancer, issues related to the health care system, practical issues of life).ConclusionResults contribute to insight on how individuals at risk cope with genetic testing and will inform the development of a PROM on their HRQOL that will be applicable for individualised patient management and service evaluation.</p
Developing cancer quality of life assessment tools
No full textUsing Quality of Life (QoL) as a patient reported outcome relies upon good quality assessment tools. This chapter will consider the basic foundations and principles to guide development. The importance of creating the rationale for development and planning the development process are highlighted. The key stages in the development process are discussed including the generation of QoL items, construction and piloting/pre-testing an assessment tool. Other issues are briefly considered e.g., moving from development into validation, alongside other areas such as translation, electronic applications and modern measurement approaches. The wider context including the importance of collaboration with multidisciplinary experts and patient involvement are highlighted in developing robust QoL assessment tools
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Developing cancer quality of life assessment tools
No full textUsing Quality of Life (QoL) as a patient reported outcome relies upon good quality assessment tools. This chapter will consider the basic foundations and principles to guide development. The importance of creating the rationale for development and planning the development process are highlighted. The key stages in the development process are discussed including the generation of QoL items, construction and piloting/pre-testing an assessment tool. Other issues are briefly considered e.g., moving from development into validation, alongside other areas such as translation, electronic applications and modern measurement approaches. The wider context including the importance of collaboration with multidisciplinary experts and patient involvement are highlighted in developing robust QoL assessment tools
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The impact of delays in transfer to specialist rehabilitation on outcomes in patients with acquired brain injury
No full textObjective: To determine the effect of time waiting for admission to inpatient neurorehabilitation following acquired brain injury on rehabilitation outcomes. Design: A retrospective observational case series. Setting: A specialist brain injury inpatient rehabilitation service.Subjects: Consecutive 235 admissions to specialist brain injury rehabilitation following acutely-acquired brain injury between 2019 and 2022.Main Measures: Waiting time from point of injury to admission, diagnostic category, admission complexity (Patient Categorisation Tool), functional status (Functional Independence Measure-Functional Attainment Measure), care needs (Northwick Park Care Needs Assessment), change in functional status and care needs over duration of admission (efficiency). Sub group analysis for was performed for patients with a tracheostomy, enteral feeding, anticonvulsant treatment and prior neurosurgery.Results: There was no relationship between admission wait and initial complexity (rs=.006, p=.923), functional status (rs=-.070, p=.284) or care needs (rs=.019, p=.768). Longer waiting times were significantly associated with reduced efficiency of rehabilitation (rs=-.240, p=.0002) and change of care needs (rs=-.246, p=.0001). Longer waits were associated with reduced rehabilitation efficiency for patients prescribed anticonvulsants (n=115, rs=-.243, p=.009), with a tracheostomy (n=46, rs=-.362, p=.013), requiring enteral nutrition (n=137, rs=-.237, p=.005) or having had intracranial surgery (n=97, rs=-.344, p=.0006). There was a negative association between waiting times and reduction in care needs for patients admitted on anticonvulsants (rs=-.319, p=.0005) and requiring enteral nutrition (rs=-.269, p=.001).Conclusion: Longer wait for transfer to rehabilitation following brain injury is associated with reduced improvement in functional status and care needs over time. Attention should be given to ensuring rapid transfer into inpatient rehabilitation services.</p
The impact of jejunostomy feeding on nutritional outcomes after oesophagectomy
No full textBackground: Nutritional status is compromised long-term following oesophagectomy. Controversy surrounds the optimal route for nutrition support post-operatively, and there is wide variation in the use of feeding jejunostomy tubes.Methodology: A retrospective service evaluation was conducted for all consecutive adults who underwent oesophagectomy for a cancer diagnosis within a specialist centre between April 2016 and July 2019 (n=165). Nutritional and clinical outcomes were compared for patients who received jejunostomy feeding (n=24) versus those who did not (n=141).Results: Patients with feeding jejunostomy lost significantly less weight at both 6 and 12 months post-operatively compared to those without jejunostomy (p=Conclusion: Use of short-term supplementary jejunal feeding in addition to oral intake after hospital discharge is beneficial for maintaining weight after oesophagectomy. We suggest a future randomised-controlled trial to confirm these findings.</p
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The impact of jejunostomy feeding on nutritional outcomes after oesophagectomy
No full textBackground: Nutritional status is compromised long-term following oesophagectomy. Controversy surrounds the optimal route for nutrition support post-operatively, and there is wide variation in the use of feeding jejunostomy tubes.Methodology: A retrospective service evaluation was conducted for all consecutive adults who underwent oesophagectomy for a cancer diagnosis within a specialist centre between April 2016 and July 2019 (n=165). Nutritional and clinical outcomes were compared for patients who received jejunostomy feeding (n=24) versus those who did not (n=141).Results: Patients with feeding jejunostomy lost significantly less weight at both 6 and 12 months post-operatively compared to those without jejunostomy (p=Conclusion: Use of short-term supplementary jejunal feeding in addition to oral intake after hospital discharge is beneficial for maintaining weight after oesophagectomy. We suggest a future randomised-controlled trial to confirm these findings.</p
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Understanding the barriers and facilitators to individuals with symptoms of colorectal cancer seeking help: a preliminary mixed methods systematic review
No full textNo description supplied</p
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Nutritional self-management in colorectal cancer patients and survivors: a scoping review
No full textAim: Colorectal cancer (CRC) patients need CRC-specific dietary guidance, but often lack access to adequate nutritional information and support. This scoping review identified study interventions, online resources, which have been produced to support nutritional care self-management for CRC patients from diagnosis, through treatment and into survivorship and guidelines to underpin these. Methods: The review was carried out in accordance with the Joanna Briggs Institute method for Scoping Reviews. Study interventions, online resources that support the self-management of nutrition and diet in CRC patients were eligible for inclusion, along with CRC-specific guidelines. Searches up to February 2023, were carried out via MEDLINE, CINAHL, PsycInfo, Embase, and Web of Science for published literature and ProQuest Dissertations, Theses Global, TRIP Medical Database, and Google search engines for grey literature. Two reviewers independently screened titles and abstracts, and relevant full texts for inclusion. Data were analysed descriptively. Results: Eight study interventions, seventy-four online resources and three guidelines specifically aimed at CRC patients were included in the review. Study interventions were heterogenous with respect to duration, whether it was personalised, who supported delivery and which guidelines underpinned the intervention. Three study interventions resulted in improved quality of life and one lengthened survival. Thirty-six (48.6%) online resources were produced by UK charity organisations. Most of the included information was for patients after completing treatment. Specific advice for patients with a stoma was lacking. Some of the online resources provided conflicting advice. The three guidelines explained how dietary adjustments can help address symptoms related to cancer or treatment and two provided more specific guidance on making dietary changes, with specific examples of how to tailor dietary advice to patient needs. Conclusion: This scoping review of study interventions, online resources, and guidelines highlighted the need for reliable, detailed, and personalised information to help CRC patients to self-manage their nutritional care.</p
Going Beyond Counting First Authors in Author Co-citation Analysis
Get PDFThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
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