Exploring important service characteristics of telephone cancer information and support services for callers: protocol for a systematic review of qualitative research

Introduction

Cancer is a leading cause of death worldwide; in 2020, almost 10 million deaths were accountable to this disease.1 In 2020, Australia and New Zealand had the highest age-standardised incidence of cancer globally.1 Communication and access to cancer information are critical to assist people with cancer, their families and healthcare professionals to provide optimal care and make informed decisions.2–5 However, accessing accurate and helpful information can be difficult to navigate and comprehend. When faced with a cancer diagnosis, often the initial source of information is face-to-face discussion with oncology healthcare professionals. In addition, the number and variety of supplementary information sources continue to expand, including telephone and web-based resources, cancer websites and forums, online blogs, cancer social media sites, cancer information booklets, friends and family, and other people with cancer.6 7 While these resources offer a wide range of avenues for accessing cancer information and support, challenges remain on how to best provide appropriate, accurate and tailored cancer advice and material that is useful to those seeking knowledge about cancer and cancer treatments.

Although online cancer resources offer anonymity and immediacy, the limitlessness of the internet can make relevant resources difficult to find and navigate.8 9 Often, online resources do not meet the needs of patients with cancer, particularly for patients living with disabilities, rare cancers or those seeking more tailored information.9 10 The prevalence of online resources, such as platforms like TikTok, continues to grow but their contribution to the ever-expanding availability of cancer information remains questionable.8 While such resources provide a convenient and educational tool for health-related content, social media platforms are typically not peer reviewed, and may present misleading, inaccurate or potentially harmful facts.8 9 Gage-Bouchard and colleagues explored the medical accuracy of cancer information exchanged on social media by carers of people with cancer, reporting that 19% of online cancer-related content was not scientifically accurate, with a further 14% discussing unproven treatments for cancer.11

As technology and avenues for cancer information have developed, ways of seeking cancer information have changed over time. Recently, Hyatt and colleagues9 investigated Australian adult preferences and gaps in cancer information provision; of the almost 500 people surveyed, nine sources of information were identified. Seventy-six per cent used the internet, followed by asking their doctor, written booklets, asking a nurse or family and friends, with cancer support telephone lines identified by 23%.9 German research reports people calling a cancer information and support service (CISS) used different information sources before contacting the service. Medical specialists and oncologists were the primary source of cancer information, followed by the internet, general practitioners, brochures, family/friends, newspapers, television/radio, social support groups, a cancer information service and health insurance. Further, the analysis revealed that internet-informed callers were likely to be statistically significantly younger than physician-informed callers (p<0.001).6 These studies confirm the need for diverse resources to address the needs of cancer information provision for all.

Receiving ongoing support at each stage of the cancer trajectory helps to reduce the risks of information overload and offers timely and relevant answers.9 One alternative to decrease information overload and reliance on online cancer information is telephone CISS. One of the earliest services began in 1975 in the USA to increase public knowledge of the disease with the aim of reducing cancer incidence and mortality.12 13 Since then, telephone CISS are now provided in many countries including the UK, USA, Europe and Australia.12 14–16 Mainly funded by not-for-profit and charitable organisations, operationally, the services differ between countries and even jurisdictions in the same country.17 18

Staffing of the services varies from solely teams of specialist oncology nurses to teams of allied health professionals and peers or volunteers, consequently varying the training and education requirements of the staff.14 17 19–21 Diversity in some teams includes staff from regional and rural locations as well as metro and bilingual staff to be able to provide service in multiple languages22 23; operating hours can be different, standard business or extended hours14; and accessibility of the service to minority groups (eg, culturally and linguistically diverse; lesbian, gay, bisexual, transgender, intersex and queer (or questioning)) varies.14 15

Additionally, referral pathways provided by telephone CISS differ. While many referrals are limited to services offered outside the service provider (eg, home-help, transport assistance, allied health), some organisations have filled gaps in unmet needs by developing services internally such as a wig service, financial advisors, peer support programmes and nurse counselling.17 19 24 25 Some providers of telephone CISS have developed additional resources in lay language to provide easily accessible, credible information for callers.14 26 As technology and users’ needs have changed, others have extended their scope from a telephone-only service to include a web-chat feature, email correspondence or direct referral from healthcare professionals (with patient’s approval).17 Relationships and collaborations with health services and healthcare professionals also vary in telephone CISS models, working collaboratively with health services in cancer support of patients and families.17 27

The variations in telephone CISS delivery stem from the scope, funding and resources available to the organisations providing the service. While attempts have been made to summarise and quantify the information needs of people with cancer and their caregivers, an in-depth analysis of caller preferences for telephone CISS is lacking. The majority of callers are adults with cancer aged 18–80 years, with carers aged 40–60 years as frequent service users.19 28 29 Therefore, this systematic review will focus on adult callers aged 18 years and older. This gap in the literature provides an opportunity to explore callers’ needs from their perspectives and determine whether current services address these needs. Consequently, the aim of this systematic review is to describe, summarise and synthesise the qualitative literature on reporting service characteristics telephone CISS adult users identify as important. Furthermore, this review will identify service characteristics important to CISS callers, and inform the design of a quantitative survey, a discrete choice experiment, to elicit adults with cancer and their families’ preferences for service provision.

Review questions

This systematic review addresses two related research questions:

  1. What service characteristics are important to callers to telephone CISS?

  2. What are the benefits of telephone CISS for callers from their perspectives? For example, psychological support, advice and creating support networks?

Methods and analysis

This protocol is reported according to the recommendations of the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols statement30 31 (see online supplemental file 1).

Supplemental material

Eligibility criteria

Published, peer-reviewed articles reporting qualitative research on the service characteristics of telephone CISS important to adult callers in any language will be included in the review. Studies reporting analysis of open-ended or free-text questions related to the research question will be eligible for inclusion in the systematic review.

Inclusion criteria

  • Studies including qualitative data about adults requiring information and support about cancer (any cancer type or disease stage), that is, people living with cancer, informal carers, the public and healthcare professionals.

  • Studies reporting any cancer telephone service in any setting, for example, hospital-based, not-for-profit service, focused on improving caller health and well-being. For example, service benefits, such as reduced psychological stress and creation of support networks, improved quality of life and/or well-being, satisfaction with service, feasibility of service provision, usefulness of information provided, availability of service and ease of use.

Exclusion criteria

  • Non-peer-reviewed publications including comment or discussion papers, editorials, conference abstracts or papers and the grey literature.

  • Studies reporting quantitative data only.

  • Studies of children (age <18 years).

  • Studies investigating other interventions such as telephone genetic screening.

Search strategy

A comprehensive search of the literature will be conducted from database inception until 30 March 2023 in the following databases: OVID MEDLINE, EMBASE, CINAHL, PsycINFO and SocINDEX to identify relevant published studies fitting the inclusion criteria. Search terms, that is, keywords and medical subject headings, will be based on the research question, population (adults requiring cancer information or support), intervention type (telephone cancer information and support services) and study design (qualitative). The database search strategies are described in the online supplemental file 2.

Supplemental material

Backward and forward citation tracking of included articles, that is, checking reference lists and searching for article citations, respectively, will be conducted in Web of Science and Google Scholar for additional literature unidentified by the search (minimising selection bias).32 33 Search results will be downloaded into Clarivate EndNote V.20.2.1,34 and Covidence software35 libraries will be used to manage records throughout the review.

Selection process

The titles and abstracts of the studies identified by the search will be screened independently by two researchers (AL, AM) to determine eligibility for inclusion in the review. Full-text articles will be retrieved for assessment when the abstract contains insufficient information. Studies in languages other than English that can be translated adequately using Google Translate will be included. Subsequently, full-text articles for all potentially eligible records will be independently screened for inclusion in the review (AL, AM) and reasons for exclusion will be recorded. The third researcher (NM) will resolve any disagreement. Results of the study selection process will be presented as a Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram, and a list of excluded articles will be provided with reasons for exclusion.

Quality appraisal and confidence in review findings

The methodological quality of the included studies (including any potential risk of bias) will be evaluated independently by two reviewers (AL, AM) using the 2022 Critical Appraisal Skills Programme (CASP) Qualitative Studies Checklist.36 The CASP checklist contains 10 questions across three domains, namely, a description of the results, the validity of the results and the value of the research. Responses to each of the 10 questions are ‘yes’ (3 points), ‘can’t tell’ (2 points) or ‘no’ (1 point), with a maximum score of 30. Any disagreement will be resolved by a consensus among the team.

The quality of evidence for all outcomes of the systematic review findings will be judged using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research approach to reflexively assess the confidence. This tool assesses the review findings across four areas:

  1. Methodological limitations (any concerns about the design or conduct of the primary studies that contributed evidence to the review finding).

  2. Coherence (an assessment of how clear, robust or compelling the fit is between the data from the primary studies and a review finding that synthesises qualitative data).

  3. Adequacy of data (the degree of richness and quantity of data supporting a review finding).

  4. Relevance (the extent to which the body of evidence from the primary studies supporting a review finding is applicable to the context, perspective or population).

This information will be presented in a Summary of qualitative findings table.

Data extraction

A data extraction form will be developed in Microsoft Excel37 collecting key study characteristics of telephone cancer information and support services including:

  • Basic study information, including author, year of publication and country.

  • Study setting, including setting of telephone CISS, for example, hospital-based, not-for-profit service.

  • Study design, including sample size and sampling procedures; aims and research questions; qualitative methodology, for example, interviews, focus groups, observation; type of qualitative analysis; qualitative themes identified and any representative quotes.

  • Description of participants, including type of participant, for example, person with cancer, carer, healthcare professional, average age and gender.

  • Funding sources.

One researcher (AL) will extract the data from the included studies and a second researcher (AM) will check the data extraction. The views of the third researcher (NM) will be sought where there is ambiguity or disagreement.

Data synthesis

A narrative and thematic synthesis of the included studies will be provided in accordance with guidance from the Cochrane Collaboration.38 Tables summarising the key features of the included studies and quality assessment will be presented. Similarities and differences between the studies and results will be reported. All relevant studies will be included in the review and an assessment of how the quality appraisal may affect the main results will be presented.

Patient and public involvement

This research is being undertaken as part of the National Health and Medical Research Council Partnership Project (APP2005191), ‘Defining and optimising the economic and social return on investment of telephone cancer information and support services for all Australians’, which includes nine studies. Engaged participation of service users, including community representatives, healthcare professionals and government organisations, is encouraged in local workshops, across all of the study and project advisory committees and at conferences. The broader research programme is also guided by a Community Advisory Group including people living with cancer/survivors and their families, with a community representative actively involved in the study advisory groups. Representatives of healthcare professionals, cancer organisations and a community representative (patient) have contributed to and continue to have input into this study. Of note, a community representative is an associate investigator on the project. The systematic review results will be shared with stakeholders, including patient organisations, healthcare professionals, policymakers and the general public.

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