Statement of ethics
This study was approved by the medical ethics committee (protocol number 2019–5735) of the Radboud university medical center (Radboudumc). Written informed consent was obtained for all included patients. No external incentives were provided.
Study design
This is a pilot study with a prospective cohort of patients diagnosed with pancreatic tumors in a tertiary health center in the Netherlands. This study report is in accordance with the STROBE-guidelines (Strengthening the Reporting of Observational Studies in Epidemiology) [15].
Setting and study population
Patients discussed in the weekly multidisciplinary tumor board meetings (MDT) of the PACON (Pancreatic Center East Netherlands) held between October 1, 2018 and December 31, 2018 were invited to participate. The PACON is part of the Radboudumc, a tertiary medical center serving six affiliated general hospitals regarding pancreatic care in the surrounding region, consisting of approximately two million inhabitants. The pancreatic care network is characterized by an anchor establishment, the Radboudumc, offering a vast array of pancreatic tumor care services, such as pancreatic surgery, and the affiliating hospitals, offering a more limited array of pancreatic tumor care services, such as systemic treatment. In order to provide appropriate care, these affiliating hospitals need to collaborate closely with the Radboudumc and refer patients if necessary. GPs can also be considered part of the network, as in the Netherlands they are the gatekeepers to secondary care. If required, they refer patients to the hospital and play a role during the entire disease trajectory.
Eligible patients with tumors of the pancreas, both (pre) malignant or benign tumors, who were discussed in the PACON between October 1, 2018 and December 31, 2018, were contacted by email between September 2019 and December 2019. Because they were referred to the PACON a year prior, they had at least a 12-month period to experience pancreatic care in the network. In case of no response, patients were sent a reminder by email and called once by a team member.
Patients aged under 18 years, those with speaking or reading difficulties in the Dutch language, and patients without a therapeutic relationship with a healthcare professional of Radboudumc regarding their pancreatic tumor, were excluded.
Data collection
Clinical data and treatment characteristics were retrieved from the patient’s electronic medical record. These included sex, age, time of referral, referring center and discipline, type and number of diagnostic investigations in the diagnostic phase in the referring center and in the tertiary center. A repetition of diagnostics was defined as a repeat diagnostic investigation in the tertiary center within 5 months after the same diagnostic investigation. Furthermore, number of MDTs, MDT advice, type of treatment, start of treatment, number of consultations, either at the outpatient clinic or by telephone, were retrieved. Number of consultations are considered up until 1 April 2019.
Nijmegen continuity of care questionnaire (NCQ)
The NCQ is an instrument that measures COC experienced by patients in primary and secondary care settings [16, 17]. It comprises 28 items divided into two subdomains: ‘personal continuity’ and ‘team/cross-boundary continuity’. The assessment of personal continuity involves 16 questions concerning the relationship with the patient’s health care provider, i.e. the general practitioner and the most important medical specialist, as determined by the patient. This personal continuity assesses the patient’s perception of how well the care provider knows the patient and how committed the care provider is. The second domain assesses ‘team/cross-boundary continuity’ with 12 questions, indicating the patient’s perceived COC throughout the team of primary care, the team of specialized hospital care and the cooperation between these two. Each question can be answered on a 5-point Likert scale ranging from 1 (“strongly disagree”), 2 (“disagree”), 3 (“neutral”), 4 (“agree”) to 5 (“strongly agree”), or with “?” (“I do not know”). Each subscale eventually has a mean score. NCQ-scores below 2 are interpreted as low, a mean score of 3 as moderate and mean scores of 4 or higher as high continuity of care. Additional file 1: Appendix A shows the full questionnaire. The questionnaire is considered a reliable, comprehensive instrument that measures COC as a multidimensional concept, regardless of comorbidity or care setting. It has been validated in primary care and secondary care, as well as in other languages [12, 13, 18]. To adequately assess COC, patients should have had contact with a GP or medical specialist in the previous year. The NCQ was developed to enable baseline measurements in the evaluation of interventions aiming for improved COC.
In this study, patients received a secured email providing access to the online questionnaire. After finalizing the questionnaire, patients were given the opportunity to write down additional remarks in a blank box. The NCQ-questionnaire was used in the original Dutch language and was not adjusted.
Reliability of the NCQ-questionnaire for patients with pancreatic tumors
Since the NCQ was used in its original version, a factor analysis with content and construct validity as done by the original study [16] was deemed unnecessary. However, to indicate the robustness of the NCQ for the pancreatic tumor population, reliability was tested with the calculation of Cronbach’s alfa. Cronbach’s alfa indicates the reliability of questionnaire-items, in which alfa values > 0.8 indicate good reliability [19]. In addition, the numbers and percentages of patients with the highest and lowest score possible (ceiling and floor effects) were presented and compared to the floor and ceiling effects as observed by the original study. Floor and ceilings effects are considered to be present if > 15% of the respondents score the highest or lowest score possible [20]. With the Cronbach’s alfa and trends in ceiling and floor effects, the reliability and usefulness of this questionnaire for the pancreatic tumor population was determined.
Statistical analysis
Data was analyzed using SPSS version 25 (SPSS Inc., Chicago, IL, USA). Descriptive data was presented as mean and standard deviation (SD) or median and range as appropriate. Categorical variables were expressed in numbers and percentages. NCQ-item scores were expressed in item means, SD and subscale scores. Patients who answered the first subscale item with ‘this subscale is not applicable to me’ and patients who answered a subscale item with ‘I do not know’ or ‘?’ were reported as missing rates. We reported the number of missing values per item and we did not compensate for missing values by imputation. A minimum of three items per subscale were required to be filled out for being considered in the analyses. Differences between GPs and medical specialists concerning mean NCQ scores were calculated using a Paired Samples T-test. Correlations between NCQ scores and patient characteristics were calculated with a Spearman’s correlation coefficient. Differences in baseline characteristics between patients with insufficient (< 3) and sufficient NCQ score (≥3) groups were calculated with a Mann-Whitney U test. P-values < 0.05 were considered statistically significant.