Does Geography and Place of Residence Affect Cancer Care: An Interview Study
Condition: Cancer
Study type: Observational

Summary: 
      There is existing evidence that rural cancer patients tend to have worse survival outcomes.
      Potential reasons include: differences in endurance of coping with illness, different
      attitudes about illness, the nature of rural lifestyles, and poorer access to healthcare
      services. Some of these factors may affect their delay in presentation of cancer, and/or
      delay in seeking treatment in a timely manner. Differences in health outcomes between urban
      and rural populations have been described in a number of health conditions, and to date
      survival/health outcomes related to cancer have been the most extensively researched.
      Rurality has been associated with negative impacts on cancer outcomes in studies from the
      United Kingdom and elsewhere. However, as with rural health disadvantage overall, the
      underlying causes are uncertain. There is some evidence that rural populations are less
      likely to engage with screening services and receive lower rates of chemotherapy and surgery.
      If restricted access to services was the major determinant of poorer cancer outcomes for
      rural populations, this should also be reflected in longer delays to diagnosis and treatment
      for cancer for those patients living more remotely. However, a recent study from the
      Northeast of Scotland contradicts this, finding that rural patients in Scotland were
      diagnosed and treated for their cancers quicker than their urban counterparts, but died
      earlier . The investigator's proposed research aims to provide insights into differences
      between how urban and rural patients engage with health services in National Health Service
      (NHS) Grampian by interviewing patients about their diagnostic pathway, their interactions
      with the healthcare service, their treatment choices, and how these may have been influenced
      by where they live.
    

Detailed description: 
      A review of literature and data analysis within the Northeast Aberdeen Scotland Cancer and
      Residence (NASCAR) database has established that although rural patients are diagnosed and
      treated much more quickly than their urban counterparts, they are significantly more likely
      to die in the first year after diagnosis. At times, it was found that patients voluntarily
      opted out of certain recommended regimens such as radiotherapy simply due to the burden of
      travel. Currently, literature only proposes themes such as stoicism, attitudes, the nature of
      rural lifestyles, and access to healthcare services, but nothing is explicitly defined. Rural
      living may influence healthcare interaction at multiple levels and the potentially complex
      effect on cancer outcomes is best addressed through qualitative research with both urban and
      rural patients. Qualitative enquiries are most likely to give insights into potential
      mechanisms of urban/rural inequality within Northeast Scotland beyond.

      The Social Ecological Model (SEM) is a theory-based framework for understanding the
      multifaceted and interactive effects of personal and environmental factors that determine
      behaviours, and for identifying behavioural and organisational leverage points and
      intermediaries for health promotion within organisations (9). This model includes several
      nested levels; individual, interpersonal, community, organisational, and policy. When
      addressing any health issue, it is important to assess how every level influences one
      another. In our systematic literature review, the investigators found that the SEM provided
      an explanatory framework through which to explore potential inequalities in urban and rural
      cancer outcomes. Within interviews, the investigators will use the theoretical framework to
      prompt participants.

      Phase 1: Identifying eligible patients and recruitment Patients will be recruited from two
      sources. First, those from rural areas and residing at the CLAN House residence Westburn
      Road, Aberdeen during an episode of hospital-based cancer care will be approached by CLAN
      staff on behalf of the researchers. Second, patients attending oncology clinic D at Aberdeen
      Royal Infirmary will be approached by clinic staff on behalf of researchers. Interested
      patients will be directed to the researcher provided the Patient Information Sheet from
      Clan/ARI staff to obtain more information about the study and be invited to complete the
      consent process.

      Phase 2: Interviews with consented cancer patients. Consenting research participants will be
      interviewed on a single occasion by Miss Carriere, using a semi-structured approach.
      Interviews will be digitally audio recorded with permission from the participant. The
      interview will take approximately 45 minutes. The interview will happen at a place of the
      participant's own choosing such as within the University of Aberdeen, Clinic D - Aberdeen
      Royal Infirmary (ARI), or CLAN locations. There will also be an option to conduct telephone
      interviews which will last approximately 45 minutes.

      Phase 3: Transcribing data from interviews and coding them appropriately Miss Carriere or NJC
      Secretarial, who is a member of university staff in Academic Primary Care will transcribe all
      interviews after they occur and which is an approved third party organisation for
      transcribing such work. Miss Carriere will also utilise a 'Contact Sheet' to record
      impressions of the participant not picked up by audio-recorded data (Miles and Huberman).
      This will take up to 6 months to complete and analyse. Participant interviews will be
      transcribed verbatim for analysis. Framework analysis using components of the
      socio-ecological model, a coding framework of the main themes and sub themes will be
      established (9). NVivo version 12 software will be used to assist with the management of the
      data. A sample of manuscripts will be coded by a second researcher to ensure validity.

      Phase 4: Disseminate information gathered from interviews Study results will be collated in
      the form of a manuscript and further expanded in a PhD thesis. At the time of the interview,
      participants will be asked to if they would like to receive a copy of their manuscript.
      Before publication of the manuscript, any participants requesting to be kept informed of
      results will be emailed a copy of the final study report or a lay summary of the results will
      be published and available.

      Data Management Digital audio-recordings will be transcribed by Miss Carriere or transcribed
      by NJC Secretarial and all data will be anonymised by Miss Carriere according to unique
      participant identification codes. NJC Secretarial will receive a copy of the audio recorded
      files with only the anonymous study ID number via secure file transfer service ZendTo hosted
      by University of Aberdeen. NJC Secretarial will transcribe this data, sending the
      transcription back to Romi Carriere via Zend to. Audio recordings would then be deleted by
      NJC Secretarial. Transcripts will be imported into NVivo version 12, and each participant
      will be assigned a Study ID that will de-identify their private information. This study ID
      will be stored separately from the other data and will only be accessed by the research team.
      Data will be securely stored within and excel file within a secure server and/or locked
      cabinet in the Institute of Applied Health Sciences at the University of Aberdeen. All study
      documentation will be kept for at least 10 years after publication of the study data in
      accordance with the sponsors archiving Standard Operating Procedure (SOP).
    

Observational model: Other
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        The recruited population will be newly diagnosed cancer patients