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Research

Patient involvement in diagnosing cancer in primary care: a systematic review of current interventions

Jane Heyhoe, Caroline Reynolds, Alice Dunning, Olivia Johnson, Alex Howat and Rebecca Lawton
British Journal of General Practice 2018; 68 (668): e211-e224. DOI: https://doi.org/10.3399/bjgp18X695045
Jane Heyhoe
Bradford Institute for Health Research, Bradford.
Roles: Senior research fellow
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Caroline Reynolds
Bradford Institute for Health Research, Bradford.
Roles: Research practitioner
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Alice Dunning
School of Psychology, University of Leeds, Leeds.
Roles: PhD student
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Olivia Johnson
University of Leeds, Leeds.
Roles: Formerly School of Psychology
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Alex Howat
Formerly Institute of Psychiatry, Psychology, and Neuroscience, King’s College London, London.
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Rebecca Lawton
Psychology of Healthcare, School of Psychology, University of Leeds, Leeds, and Bradford Institute for Health Research, Bradford.
Roles: Professor
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    Figure 1.

    Flow diagram of search strategy for Aim 1.

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    Figure 2.

    Flow diagram of search strategy for Aim 2.

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    Figure 3.

    Logic model — patient involvement in diagnosing cancer in primary care. HCP = healthcare professional.

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    Table 1.

    General characteristics of articles included in systematic review

    Author/yearType of cancerCountryArticle typeAim — text taken from paperStudy designSettingPopulation characteristics
    Banks et al, 201433Lung, pancreatic, colorectalEnglandResearchTo establish the likelihood that individuals would choose to be tested for cancer at various levels of riskVignette-based study26 general practices across England3469 individuals (≥40 years)
    Birt et al, 201434LungEnglandResearchTo understand the symptom evaluation, or ‘appraisal’, and help-seeking decisions of patients with symptoms suggestive of lung cancerProspective cohort face-to-face interview studySpecialist respiratory clinics in secondary and tertiary care, England35 patients (male = 20, female = 15; mean age 58.5 years; range 41–88 years; 17 with lung cancer, 18 with other conditions)
    Black et al, 201535Colorectal, upper GI, lung, haematological, head and neck, gynaecological, unknown primaryEnglandResearchTo capture in detail the experiences of patients whose cancer was diagnosed following an ED visit to understand how emergency presentations arise, and identify where there is scope to improve outcomesInterview11 EDs across nine acute NHS trusts (participants came from seven NHS trusts)27 patients (male = 15, female = 12; median age 59 years; range 18–92 years)
    Evans et al, 200636OvarianUKResearch1) To use accounts of provider delay from a sample of British women with ovarian cancer to enhance Andersen’s model of total patient delay; 2) To suggest what GPs might do to minimise delaysSemi-structured interviews with a maximum variation sampleRecruitment through GPs, clinicians, support organisations, and personal contacts43 women diagnosed with ovarian cancer (mean age 54 years; range 33–80 years)
    Jensen et al, 201437Bladder, breast, colon, lung, malignant melanoma, others, ovarian, prostate, rectal, uterusDenmarkResearch1) To describe the prevalence and types of QDs that arose during the diagnostic pathway for Danish patients with cancer as assessed by the GPs; 2) To analyse the associations between QDs and the type of cancer; between QDs and the GP interpretation of presenting symptoms; 3) Impact of QDs on diagnostic interval lengthNationwide retrospective cohort questionnaire-based study1446 GPs identified through Danish national patient registry4036 newly diagnosed cancer patients (male = 2176, female = 1860)
    Lim et al, 201438CervicalEnglandResearchTo collect data on nature and duration of symptoms and risk factors for delay in presentation and diagnosis in young females with cervical cancer. To inform approaches to promote early presentation and prompt referral among young females with symptoms of cervical cancerSemi-structured interview-based measureEligible participants identified by 116 hospitals and publicising of study through charity websites128 women (18–29 years) with recent diagnosis of cervical cancer
    Lyratzopoulos et al, 201529Not specifiedN/APerspective1) To highlight factors involved in missed opportunities for cancer diagnosis among symptomatic patients; 2) Discuss potential mechanisms and approaches to accelerating progress towards minimising diagnostic delays post-presentationN/AAll settings involved in diagnostic process including general practice and primary careN/A
    Mitchell et al, 201226Lung, ovarian, upper GIEnglandToolkitDeveloped as a resource for use when considering ways to improve the diagnosis of cancer in primary care1) National audit of cancer diagnosis in primary care;
    2) Analysis of SEA;
    3) Action plans for early cancer diagnosis derived using cancer-related practice profiles
    Primary care1) 1170 practices across 20 cancer networks;
    2) SEA reports for 132 lung, 68 ovarian, and 78 upper GI cancer diagnoses;
    3) general practices across England
    Mitchell et al, 20156Brain, breast, carcinoid, CNS, colorectal, gynaecological, haematological, head and neck, lung, melanoma, sarcoma, upper GI, urological, unknown primaryEnglandResearch1) Understanding the cause of emergency presentations; 2) Determining the degree to which earlier intervention by general practice was possibleQualitative synthesis of SEAs203 primary care practices across North of England Cancer Network222 SEAs for most recent patients diagnosed with cancer as a result of an emergency presentation
    Molassiotis et al, 201039Breast, GI, gynaecological, lung, brain, lymphoma, head and neckUKResearch1) To map the pathway from initial persistent change in health to diagnosis of cancer in a sample of patients from seven diagnostic groups in the UK; 2) Explore the patient and system factors mediating this processIn-depth qualitative interviewsOutpatient clinics at one large cancer hospital74 patients (mean age 58.5 years; range 18–93 years)
    National Reporting and Learning Service, 201040All cancersUKThematic review1) To explore issues of patient safety around delayed diagnosis of cancer; 2) Provide the NHS with potential solutions1) Thematic review;
    2) Review of incidents reported to the NPSA’s NRLS;
    3) Consultation with stakeholders (focus groups, discussions, presentations);
    4) Consideration of other patient safety data, such as complaints, litigation, and audits
    Primary and secondary care1) N/A; 2) 508 patient safety incidents from random sample of 1500; 3) Two focus groups (n= 50); 4) NHS Litigation Authority; MDU Report (2003); MPS (analysis of 1000 cases of delayed or missed diagnosis); Scottish Primary Care Cancer Group reports of 4181 cancer cases
    Round et al, 201330Not specifiedUKEssayTo highlight clinician- and system-related factors that may be contributing to a delayed diagnosis of cancer in primary careN/APrimary careN/A
    Rubin et al, 201531Not specifiedHigh-income countries/countries with universal healthcare systemsCommissionTo distil the evidence for the effectiveness of interventions for cancer control based in primary care at each stage of the cancer journey, and to consider how cancer care might be delivered differently in the future. Discuss how and whether health policy for cancer control will help or hinder such change. Examines the implications for the future education and training of doctors, and identifies emerging examples of good practice worldwideN/APrimary and specialist careN/A
    Siminoff et al, 201141ColorectalUSResearch1) To describe the communication and symptom appraisal strategies of CRC patients;
    2) Determine the patient and physician characteristics, consultation communication factors, follow-up recommendations, and the referral delay factors associated with DD
    Semi-structured interview and review of medical records for verification of patient-provided informationFive academic and community oncology practices in two states242 patients of any age (mean = 58.07 years) or sex (male = 126, female = 116)
    Stevens et al, 201242LungNew ZealandReportTo develop recommendations to improve the clinical pathway from presentation to diagnosis for people with suspected lung cancerMixed methods utilising both quantitative and qualitative data:
    1) Literature review;
    2) National Stocktake;
    3) Clinical audit;
    4) Practice survey;
    5) GP survey;
    6) GP focus group;
    7) Patient interviews;
    8) Patient and family focus groups
    Four primary care organisations and three DHBs within the Northern and Midland Cancer Networks1) N/A; 2) Primary or secondary care services that could be relevant to people with lung cancer; 3) Clinical pathway from initial presentation to diagnosis (272 cases); 4) All general practices across two regions (n= 170); 5) 102 GPs across two regions; 6) 33 GPs across two regions; 7) 19 people suspected of having lung cancer who presented to a hospital ED; 8) 20 people (11 patients with lung cancer diagnosis [male = 5; female = 6] and nine family members)
    Walter et al, 201432CervicalUK and internationalEditorialNot specifiedN/APrimary careN/A
    • CNS = central nervous system. CRC = colorectal cancer. DD = diagnostic delay. DHB = district health board. ED = emergency department. GI = gastrointestinal. MDU = Medical Defence Union. MPS = Medical Protection Society. N/A = not applicable. NPSA = National Patient Safety Agency. NRLS = National Reporting and Learning System. QD = quality deviation. SEA = significant event audit.

    • 1 Diagnosis/

    • 2 diagn*.mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 3 Affect/

    • 4 Clinical competence/

    • 5 Communication/

    • 6 “Continuity of Patient Care”/

    • 7 Decision Making/

    • 8 Decision Making, Organizational

    • 9 Decision Support Systems, Clinical/

    • 10 Decision Support Techniques/

    • 11 Human Engineering/

    • 12 Judgment/

    • 13 Medical Informatics/

    • 14 Medical Records Systems, Computerized/

    • 15 Mental Recall/

    • 16 Organizational Culture/

    • 17 Patient Access to Records/

    • 18 Feedback/

    • 19 “Forms and Records Control”/st [Standards]

    • 20 Guidelines as Topic/

    • 21 Health Knowledge, Attitudes, Practice/

    • 22 Health Literacy/

    • 23 Health Records, Personal/

    • 24 Physician’s Practice Patterns/

    • 25 Problem Solving/

    • 26 Professional-Patient Relations/

    • 27 Reminder Systems/

    • 28 Systems Analysis/

    • 29 Time Factors/

    • 30 Truth Disclosure/

    • 31 Knowledge Bases/

    • 32 (cognitive error or bias or metacognition).mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 33 Patient Participation/

    • 34 (patient adj2 involv*).mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 35 involv*.mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 36 patient empowerment.mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 37 (((patient adj2 led) or patient) adj2 instigated).mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 38 Primary Health Care/

    • 39 Family Practice/

    • 40 exp Community Health Services/

    • 41 Partnership Practice/

    • 42 Private Practice/

    • 43 (medical adj2 office).mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 44 Neoplasms/

    • 45 ((cancer or neoplasm*) adj5 (diagnos* or detect*)).mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 46 (neoplasm* or cancer* or carcinoma* or malignan* or lesion* or tumo?r*).mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 47 (((family adj2 practice*) or (general adj2 practice*) or (primary adj2 care) or community) adj2 (service* or care)).mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 48 ((((((delay* adj2 diagnos*) or diagnos*) adj2 delay*) or diagnos*) adj2 error*) or misdiagnos*).mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 49 (missed adj2 diagnos*).mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 50 (patient adj2 engagement).mp. [mp=ti, ab, hw, tn, ot, dm, mf, dv, kw, nm, kf, px, rx, ui]

    • 51 1 or 2 or 48 or 49

    • 52 3 or 4 or 5 or 6 or 7 or 8 or 9 or 10 or 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20 or 21 or 22 or 23 or 24 or 25 or 26 or 27 or 28 or 29 or 30 or 31 or 32 or 33 or 34 or 35 or 36 or 37 or 50

    • 53 38 or 39 or 40 or 41 or 42 or 43

    • 54 44 or 45 or 46

    • 55 51 and 52 and 53 and 54

    • 56 limit 55 to english language

    • 57 remove duplicates from 56

    • 1 Diagnosis/

    • 2 ((((((((diagn* or delay*) adj2 diagnos*) or diagnos*) adj2 delay*) or diagnos*) adj2 error*) or misdiagnos* or missed) adj2 diagnos*).mp. [mp=title, abstract, heading word, table of contents, key concepts, original title, tests & measures]

    • 3 Emotions/

    • 4 clinical competence.mp.

    • 5 Communication/

    • 6 “continuity of patient care”.mp. [mp=title, abstract, heading word, table of contents, key concepts, original title, tests & measures]

    • 7 Decision Making/

    • 8 decision making, organizational.mp.

    • 9 decision support systems, clinical.mp.

    • 10 Decision Support Systems/ or decision support techniques.mp.

    • 11 human engineering.mp.

    • 12 Judgment/

    • 13 medical informatics.mp.

    • 14 medical records, computerised.mp.

    • 15 mental recall.mp.

    • 16 Organizational Climate/

    • 17 patient access to records.mp.

    • 18 Feedback/

    • 19 (forms and records control).mp. [mp=title, abstract, heading word, table of contents, key concepts, original title, tests & measures]

    • 20 guidelines as topic.mp.

    • 21 Health Attitudes/ or Health Knowledge/ or health knowledge, attitudes, practice.mp.

    • 22 Health Literacy/

    • 23 health records, personal.mp.

    • 24 physician’s practice patterns.mp.

    • 25 Problem Solving/

    • 26 professional-patient relations.mp.

    • 27 reminder systems.mp.

    • 28 Systems Analysis/

    • 29 time factors.mp.

    • 30 truth disclosure.mp.

    • 31 knowledge bases.mp.

    • 32 (cognitive error or bias or metacognition).mp. [mp=title, abstract, heading word, table of contents, key concepts, original title, tests & measures]

    • 33 (((((((patient adj2 involv*) or involv* or patient empowerment or patient) adj2 led) or patient) adj2 instigated) or patient) adj2 engagement).mp. [mp=title, abstract, heading word, table of contents, key concepts, original title, tests & measures]

    • 34 patient participation.mp. or Client Participation/

    • 35 Primary Health Care/

    • 36 Family Medicine/

    • 37 Health Care Services/

    • 38 partnership practice.mp.

    • 39 Private Practice/

    • 40 (((((((((medical adj2 office) or family) adj2 practice*) or general) adj2 practice*) or primary) adj2 care) or community) adj2 (service* or care)).mp. [mp=title, abstract, heading word, table of contents, key concepts, original title, tests & measures]

    • 41 Neoplasms/

    • 42 (((cancer or neoplasm*) adj5 (diagnos* or detect*)) or neoplams* or cancer* or carcinoma* or malignan* or lesion* or tumo?r*).mp. [mp=title, abstract, heading word, table of contents, key concepts, original title, tests & measures]

    • 43 1 or 2

    • 44 3 or 4 or 5 or 6 or 7 or 8 or 9 or 10 or 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20 or 21 or 22 or 23 or 24 or 25 or 26 or 27 or 28 or 29 or 30 or 31 or 32 or 33 or 34

    • 45 35 or 36 or 37 or 38 or 39 or 40

    • 46 41 or 42

    • 47 43 and 44 and 45 and 46

    • 48 limit 47 to english language

  • FieldJournal title
    Diagnosis and decision makingDiagnosis
    Medical Decision Making
    Judgement and Decision Making
    Journal of Risk and Uncertainty
    Primary health careFamily Practice
    British Journal of General Practice
    Annals of Family Medicine
    European Journal of General Practice
    Primary Health Care Research and Development
    Journal of Primary Care and Community Health
    CancerBritish Journal of Cancer
    International Journal of Cancer
    European Journal of Cancer
    European Journal of Cancer Care
    Cancer
    BMC Cancer
    Journal of Cancer
    Patient SafetyBMJ Quality & Safety
    Patient Education and Counselling
  • Articles were retained if they met all of the following inclusion criteria:
    • 1) The article was about diagnosis

    • 2) The article discussed patient involvement in diagnosis

    • 3) The article was in a primary care setting

    • 4) The article was about cancer


    Articles were excluded if:
    • 1) The article reported or its focus was cancer screening programmes

    • 2) The article was concerned only with paediatric patients

  • Articles were retained if they met all of the following inclusion criteria:
    • 1) The article provided suggestions for potential interventions/strategies to involve patients in diagnosis at the post-presentation stage

    • 2) The article identified components considered to be key for potential interventions/strategies to involve patients in diagnosis at the post-presentation stage


    Articles were excluded if:
    • 1) The article only evaluated symptom perception before presentation to primary care

    • 2) The article only evaluated help-seeking behaviour before presentation to primary care

    • 3) The focus of the article was on epidemiology (for example, patterns, causes, and effects for identifying risk factors and targets for prevention)

    • 4) The purpose of the article was to identify which symptoms are most common, or algorithms for diagnosis

    • 5) The article involved the monitoring or surveillance of high-risk and predisposed patients identified as being at increased risk of cancer

    • 6) The article was about metastasis in patients who already had cancer

    • 7) The article was a case study

    • 8) The article was about the relatives of cancer patients

    • 9) The article included no elaboration or detailed examples and suggestions for patient involvement

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British Journal of General Practice: 68 (668)
British Journal of General Practice
Vol. 68, Issue 668
March 2018
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Patient involvement in diagnosing cancer in primary care: a systematic review of current interventions
Jane Heyhoe, Caroline Reynolds, Alice Dunning, Olivia Johnson, Alex Howat, Rebecca Lawton
British Journal of General Practice 2018; 68 (668): e211-e224. DOI: 10.3399/bjgp18X695045

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Patient involvement in diagnosing cancer in primary care: a systematic review of current interventions
Jane Heyhoe, Caroline Reynolds, Alice Dunning, Olivia Johnson, Alex Howat, Rebecca Lawton
British Journal of General Practice 2018; 68 (668): e211-e224. DOI: 10.3399/bjgp18X695045
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    • Abstract
    • INTRODUCTION
    • METHOD
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    • Acknowledgments
    • Appendix 1. MEDLINE and Embase search terms
    • Appendix 2. PsycINFO search terms
    • Appendix 3. Journal search — field and journal title
    • Appendix 4. Aim 1 inclusion and exclusion criteria
    • Appendix 5. Aim 2 inclusion and exclusion criteria
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Keywords

  • cancer
  • diagnosis
  • patient involvement
  • primary health care
  • systematic review

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