175-1072 / Patient experience in oncology: the assessment of the continuity of care perceived by oncology patients

GOP Information
Organisation sharing the GOP
Related practices from PaSQ database


Quality improvement project
Patient involvement
Assessment of risk and harm
Patient involvement
GOP Description
Implementation level
Clinical settings
Public and private accredited healthcare organizations pertaining to the cancer networks formalized at the regional level.
To carry out a survey on the continuity of care as perceived by patients with cancer, aimed at identifying elements that contribute to the development of a national system for assessing quality and safety of healthcare and service integration in oncology, with particular reference to the macro-criterion of empowerment.
Healthcare organizations and professionals, patients, citizens and policy makers at the regional level.
The methodology is based on stakeholders involvement and input from experts in the fields of cancer network and quality assessment. Below the steps carried out:
–    identification of a cancer networks (Area Vasta Romagna: Azienda Unica della Romagna and Scientific Institute for Research, Hospitalization and Health Care Irst Meldola)
–    literature analysis on continuity of care and tools used to carry out assessment from patients’ perspective;
–    approval of the research protocol by the Ethic Committee, to ensure respect for patients’ rights;
– qualitative study aimed at identifying what most influence assessment according to patients;
–    development of an assessment tool (paper questionnaire) based on evidence from literature and considering what emerged from the qualitative study, the discussion with healthcare professionals (focus groups with caregivers) and the pretest with patients and the feedback from the international experts;
–    translation and adaptation of the items (double-blind) starting from questionnaires validated at the international level;
–    educational and training programs for professionals who will be helping patients filling in the questionnaire; information meetings for caregivers, clinicians, Mixed Advisory Committees and patients’ organizations;
–    statistical validation and testing in 3 Regions
Key aspect: opportunity to refer to patient experience and involvement while carrying out actions aimed at assessing and improving quality and safety of the cancer pathways.
Timeframe implementation
36 months
Implementation tools available
Questionnaire structured as follows:
–    Section A: diagnosis (q.3: 9 items)
–    B: active treatment (q n.5: 21 items)
–    C: follow up (q.2: 7 items)
–    Cbis: role of the General practitioner(q. 5: 11 items)
–    Section aimed at assessing the whole pathway: Haggerty et al (2002) scale for an overall continuity of care indicator (6 items)+ a number of items to assess service organization, patient satisfaction and involvement in clinical decisions.
–    Section on general data (including: type of cancer, time since diagnosis) and information about the compiler;
–    Items regarding: description of the pathway, any access to the emergency department.
Answers will be provided according to the five point Likert scale
Implementation cost
190.000 euros
Method used to measure the results
Content validity and face validity verified for statistical validation. Descriptive analysis to be carried out (mean, standard deviation, kurtosis index, asymmetry). Internal validity will be tested by verifying construct validity through: factor analysis, reliability, intra-item correlation.
External validity will be verified through testing: concurrent validity (positive correlations with Haggerty scale) and divergent validity (negative correlations with item “admission to emergency department”).
According to literature regarding sample size, the sampling protocol envisages involvement of 350 patients with neoplasia currently in follow- up.
Once the tool will be validated, the testing will be started. 3 Regions will be involved in the first phase.
Once identified the main areas of the care pathway (diagnosis, treatment and follow-up) and selected 4 tools to measure continuity of care, a 1st draft of the questionnaire was prepared (37 items + personal details).
Following a discussion with international experts and the identification of 7 scales used for assessment of coordination of care, a 2nd draft was prepared (63 items+ personal details).
Thanks to the discussion with the professionals (focus group and caregivers) and the pretest, items on the role of the general practitioner were added(third draft- 70 items+personal details), which is currently being validated.Data collection phase underway
Analysis of the results
Implementation barriers
Did you find implementation barriers?
Please describe implementation barriers
Patient involvement is affected by the awkward emotional and psycho-physical condition related to the diagnosis and the care pathway
Describe the strategies used to overcome the barriers (If needed)
Implementation of educational and training programs addressed to professionals who supported patients in filling in the questionnaire; involvement of patients’ organizations and Mixed Advisory Committees to raise awareness of the need for patient to participate in the improvement actions carried out by the healthcare organizations.
Other information
Other information about the GOP that you would like to add (Link or attached document)