J Genet Counsel DOI 10.1007/s10897-014-9713-8
ORIGINAL RESEARCH
Evaluation of a Clinical Genetics Service – A Quality Initiative Alison M. Elliott & Bernard N. Chodirker & Patricia Bocangel & Aizeddin A. Mhanni
Received: 25 June 2013 / Accepted: 12 March 2014 # National Society of Genetic Counselors, Inc. 2014
Abstract Paper-based surveys are an effective means of evaluating the quality of a clinical service. As part of ongoing quality improvement initiatives within our Genetics Program, new patients were invited to participate in a paper-based survey. Issues related to the quality of counseling based on educational/informational aspects (e.g. whether testing was explained fully, testing options, the meaning of normal/ abnormal testing), competency, respect and nondirectiveness of counseling in addition to clinical environment/setting were evaluated. Data related to demographics, discipline seen within the program and whether the patient was seen by a physician or genetic counselor were also captured. Five hundred questionnaires were distributed. One hundred and forty-seven questionnaires were returned, with a response rate of 29.4 %. The majority of patients seen were prenatal (pregnant) patients and comprised a heterogeneous group including those seen for advanced maternal age and abnormal maternal serum screening. Overall, 98.6 % of respondents felt their appointment in genetics was a positive experience. Issues related to confidentiality, pros and cons of testing, meaning of an abnormal test result and time allotted for decision making were significantly Electronic supplementary material The online version of this article (doi:10.1007/s10897-014-9713-8) contains supplementary material, which is available to authorized users. A. M. Elliott (*) : B. N. Chodirker : P. Bocangel : A. A. Mhanni WRHA Program of Genetics and Metabolism, University of Manitoba, FE229 CSB Health Sciences Centre, 820 Sherbrook Street, Winnipeg, MB R3A 1R9, Canada e-mail: [email protected] A. M. Elliott : B. N. Chodirker : A. A. Mhanni Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, MB, Canada A. M. Elliott : B. N. Chodirker : P. Bocangel : A. A. Mhanni Department of Biochemistry and Medical Genetics, University of Manitoba, Winnipeg, MB, Canada
different in some disciplines between genetic counselor and geneticist. However, when controlling for referral indication, these differences lost significance with the exception of issues relating to confidentiality and perceived time allotted to organize thoughts and questions. This survey provided valuable information to allow for improvement in the quality of the provision of service. Keywords Genetic counseling . Quality . Patient satisfaction . Informed consent . Nondirectiveness
Introduction Paper-based surveys have been used to evaluate patient/client satisfaction with clinical encounters in genetics (Davey et al. 2005; Michie et al. 1997; Nisselle et al. 2008; Vadaparampil et al. 2011). These surveys serve as valuable measures to assess the quality of a genetics consultation (Clarke 1993; Shiloh et al. 1990). Quality can be defined as “the degree of excellence, the extent to which an organization meets clients’ n e e d s a n d e x c e e d s t h e i r e x p e c t a t i o n s . ” ( w w w. patientsafetyinstitute.ca). One of the significant challenges evaluating quality in genetics is the lack of defined outcomes (Williams 2009). Zellerino and colleagues (Zellerino et al. 2009a, b) used an international survey to assess perspectives of genetics professionals, patients and health care administrators with respect to quality issues in genetics. Outcomes were evaluated for importance as well as appropriateness and practicality. Using these results, a set of outcome domains was generated to develop quality indicators. These findings were then utilized to develop a validated and reliable patient satisfaction questionnaire. Two areas important to surveyed groups included “were patient questions answered” and “was the patient
Elliott et al.
treated with respect.” Variables related to these areas were included in our questionnaire. The present study was conducted in Winnipeg, Manitoba, Canada at the Winnipeg Regional Health Authority (WRHA) Program of Genetics and Metabolism, located at the Health Sciences Centre. Regional Health Authorities are geographic divisions of healthcare jurisdictions that are ultimately controlled by the governing province. Each clinical program within the WRHA has a corresponding Quality and Standards committee, which is committed to promoting and achieving high quality care and service, providing key information to facilitate effective knowledge management and supporting evidence based decision-making (www.wrha.mb. ca). One of the specific initiatives of this committee is the creation and utilization of Quality Improvement Roadmaps that assist programs in developing and monitoring the provision of service. The study reported here was initiated as part of the Quality Improvement initiatives. Manitoba is the easternmost Canadian prairie province and has a landmass of 647,797 km2 (250,116 mile2) (Natural Resources Canada, 2001, www.nrcan.gc.ca) and a population of 1,271,388 (Government of Manitoba – 2012 www.gov.mb.ca). It is the sole genetics program in the province, providing service to Manitobans and patients from Northwestern Ontario and Nunavut. In addition, some patients with inborn errors of metabolism from Saskatchewan are followed by this Program. Over 6,000 patients were seen in this Program in 2012. The patient population of Manitoba is ethnically heterogeneous and includes unique populations such as Aboriginals, Hutterites and Mennonites. The Program serves many patients in geographically isolated communities, which explains why this Program is one of the top ten provincial utilizers of Telehealth (TH) (Elliott et al. 2012). TH allows access to genetic services to patients in remote, rural communities without the need for travel. Patients seen in the Program are generally referred by physicians. As Canada has a socialized medical system, the cost of the clinical encounter and indicated, available genetic testing is covered by the government. There are four disciplines within the WRHA Genetics Program: 1) General (which includes pediatric and adult patients – referrals include developmental delay, dysmorphic features, personal and/or family history of Mendelian disorders, cancers that are not breast/ovarian), 2) Prenatal (in which all patients are pregnant and include Maternal Serum Screening (MSS) patients), 3) Metabolic (both pediatric and adult) and 4) Hereditary Breast and Ovarian Cancer (HBOC). Clinical services within the program are provided by five medical geneticists (physicians), one PhD geneticist/certified genetic counselor and eight certified genetic counselors. With the exception of the metabolic program (which has a multidisciplinary team approach) (Hartley et al. 2011) patients are generally seen by either a physician or a genetic counselor.
This distinction is determined at initial referral review and corresponds to indication of genetic referral. When a diagnosis needs to be established, and/or a physical examination is indicated, the patient is seen by a medical geneticist. In the prenatal discipline, genetic counselors and medical geneticists may see patients for the same indication. Time allotted for patient appointments varies among clinical provider. In the prenatal discipline, appointments are generally 30 and 60 min in length for physician and genetic counselor, respectively. Purpose of the Present Study The overall aim of this study was to explore patients’ satisfaction with their clinical experience with the WRHA Program of Genetics and Metabolism, as this had not been previously studied. In addition to variables related to counseling experience and clinical setting, potential differences between care providers were also assessed.
Methods Sample All new patients seen in the Program of Genetics were invited to participate in the questionnaire. Patients seen in follow up were excluded from the questionnaire as they had a previous history with the program. In-patient consultations were excluded, as were patients who required the use of an interpreter for translation. In total, five hundred questionnaires were distributed. Procedures A paper-based questionnaire based on previously published surveys (Davey et al. 2005; Michie et al. 1997; Nisselle et al. 2008; Vadaparampil et al. 2011) was provided to eligible patients (Supplemental Materials). Prior to the distribution of questionnaires to the patients, the office staff indicated on the reverse side of the form the following: i) whether the patient was to be seen by a geneticist (physician) or a genetic counselor, ii) discipline within the Program (e.g. HBOC) and iii) location of the appointment (specific clinic site or TH). The remainder of the questionnaire was completed by the patient. Patients were provided with the questionnaire at the end of their genetics appointment by the geneticist/genetic counselor who saw the patient. It was explained that the procedure was voluntary and anonymous. A stamped, self-addressed envelope was also provided. No honorarium was offered. There were four basic sections to the survey. The first section consisted primarily of demographic data and discipline seen within genetics. The subsequent two sections related to the quality of the clinical encounter – i) the quality of
Evaluation of a Genetics Service
counseling based on educational/informational aspects (e.g. whether testing was explained fully, testing options, the meaning of normal/abnormal testing) and ii) competency, respect and directiveness of counseling. The final component dealt with clinical environment/setting. Patients also evaluated whether or not the appointment was a positive experience and worthy of their time. Patients also had the opportunity to make comments related to their clinical experience. Data Analysis Descriptive statistics were utilized to evaluate demographics and clinical satisfaction. Totals in certain categories differ due to missing data. Statistical analysis was performed in two components: i) unstratified data and ii) stratified data – a) provider (counselor and medical geneticist) and b) discipline/reason for referral within the Program. SPSS11.5 was utilized for Chi square analysis. A P value of
ORIGINAL RESEARCH
Evaluation of a Clinical Genetics Service – A Quality Initiative Alison M. Elliott & Bernard N. Chodirker & Patricia Bocangel & Aizeddin A. Mhanni
Received: 25 June 2013 / Accepted: 12 March 2014 # National Society of Genetic Counselors, Inc. 2014
Abstract Paper-based surveys are an effective means of evaluating the quality of a clinical service. As part of ongoing quality improvement initiatives within our Genetics Program, new patients were invited to participate in a paper-based survey. Issues related to the quality of counseling based on educational/informational aspects (e.g. whether testing was explained fully, testing options, the meaning of normal/ abnormal testing), competency, respect and nondirectiveness of counseling in addition to clinical environment/setting were evaluated. Data related to demographics, discipline seen within the program and whether the patient was seen by a physician or genetic counselor were also captured. Five hundred questionnaires were distributed. One hundred and forty-seven questionnaires were returned, with a response rate of 29.4 %. The majority of patients seen were prenatal (pregnant) patients and comprised a heterogeneous group including those seen for advanced maternal age and abnormal maternal serum screening. Overall, 98.6 % of respondents felt their appointment in genetics was a positive experience. Issues related to confidentiality, pros and cons of testing, meaning of an abnormal test result and time allotted for decision making were significantly Electronic supplementary material The online version of this article (doi:10.1007/s10897-014-9713-8) contains supplementary material, which is available to authorized users. A. M. Elliott (*) : B. N. Chodirker : P. Bocangel : A. A. Mhanni WRHA Program of Genetics and Metabolism, University of Manitoba, FE229 CSB Health Sciences Centre, 820 Sherbrook Street, Winnipeg, MB R3A 1R9, Canada e-mail: [email protected] A. M. Elliott : B. N. Chodirker : A. A. Mhanni Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, MB, Canada A. M. Elliott : B. N. Chodirker : P. Bocangel : A. A. Mhanni Department of Biochemistry and Medical Genetics, University of Manitoba, Winnipeg, MB, Canada
different in some disciplines between genetic counselor and geneticist. However, when controlling for referral indication, these differences lost significance with the exception of issues relating to confidentiality and perceived time allotted to organize thoughts and questions. This survey provided valuable information to allow for improvement in the quality of the provision of service. Keywords Genetic counseling . Quality . Patient satisfaction . Informed consent . Nondirectiveness
Introduction Paper-based surveys have been used to evaluate patient/client satisfaction with clinical encounters in genetics (Davey et al. 2005; Michie et al. 1997; Nisselle et al. 2008; Vadaparampil et al. 2011). These surveys serve as valuable measures to assess the quality of a genetics consultation (Clarke 1993; Shiloh et al. 1990). Quality can be defined as “the degree of excellence, the extent to which an organization meets clients’ n e e d s a n d e x c e e d s t h e i r e x p e c t a t i o n s . ” ( w w w. patientsafetyinstitute.ca). One of the significant challenges evaluating quality in genetics is the lack of defined outcomes (Williams 2009). Zellerino and colleagues (Zellerino et al. 2009a, b) used an international survey to assess perspectives of genetics professionals, patients and health care administrators with respect to quality issues in genetics. Outcomes were evaluated for importance as well as appropriateness and practicality. Using these results, a set of outcome domains was generated to develop quality indicators. These findings were then utilized to develop a validated and reliable patient satisfaction questionnaire. Two areas important to surveyed groups included “were patient questions answered” and “was the patient
Elliott et al.
treated with respect.” Variables related to these areas were included in our questionnaire. The present study was conducted in Winnipeg, Manitoba, Canada at the Winnipeg Regional Health Authority (WRHA) Program of Genetics and Metabolism, located at the Health Sciences Centre. Regional Health Authorities are geographic divisions of healthcare jurisdictions that are ultimately controlled by the governing province. Each clinical program within the WRHA has a corresponding Quality and Standards committee, which is committed to promoting and achieving high quality care and service, providing key information to facilitate effective knowledge management and supporting evidence based decision-making (www.wrha.mb. ca). One of the specific initiatives of this committee is the creation and utilization of Quality Improvement Roadmaps that assist programs in developing and monitoring the provision of service. The study reported here was initiated as part of the Quality Improvement initiatives. Manitoba is the easternmost Canadian prairie province and has a landmass of 647,797 km2 (250,116 mile2) (Natural Resources Canada, 2001, www.nrcan.gc.ca) and a population of 1,271,388 (Government of Manitoba – 2012 www.gov.mb.ca). It is the sole genetics program in the province, providing service to Manitobans and patients from Northwestern Ontario and Nunavut. In addition, some patients with inborn errors of metabolism from Saskatchewan are followed by this Program. Over 6,000 patients were seen in this Program in 2012. The patient population of Manitoba is ethnically heterogeneous and includes unique populations such as Aboriginals, Hutterites and Mennonites. The Program serves many patients in geographically isolated communities, which explains why this Program is one of the top ten provincial utilizers of Telehealth (TH) (Elliott et al. 2012). TH allows access to genetic services to patients in remote, rural communities without the need for travel. Patients seen in the Program are generally referred by physicians. As Canada has a socialized medical system, the cost of the clinical encounter and indicated, available genetic testing is covered by the government. There are four disciplines within the WRHA Genetics Program: 1) General (which includes pediatric and adult patients – referrals include developmental delay, dysmorphic features, personal and/or family history of Mendelian disorders, cancers that are not breast/ovarian), 2) Prenatal (in which all patients are pregnant and include Maternal Serum Screening (MSS) patients), 3) Metabolic (both pediatric and adult) and 4) Hereditary Breast and Ovarian Cancer (HBOC). Clinical services within the program are provided by five medical geneticists (physicians), one PhD geneticist/certified genetic counselor and eight certified genetic counselors. With the exception of the metabolic program (which has a multidisciplinary team approach) (Hartley et al. 2011) patients are generally seen by either a physician or a genetic counselor.
This distinction is determined at initial referral review and corresponds to indication of genetic referral. When a diagnosis needs to be established, and/or a physical examination is indicated, the patient is seen by a medical geneticist. In the prenatal discipline, genetic counselors and medical geneticists may see patients for the same indication. Time allotted for patient appointments varies among clinical provider. In the prenatal discipline, appointments are generally 30 and 60 min in length for physician and genetic counselor, respectively. Purpose of the Present Study The overall aim of this study was to explore patients’ satisfaction with their clinical experience with the WRHA Program of Genetics and Metabolism, as this had not been previously studied. In addition to variables related to counseling experience and clinical setting, potential differences between care providers were also assessed.
Methods Sample All new patients seen in the Program of Genetics were invited to participate in the questionnaire. Patients seen in follow up were excluded from the questionnaire as they had a previous history with the program. In-patient consultations were excluded, as were patients who required the use of an interpreter for translation. In total, five hundred questionnaires were distributed. Procedures A paper-based questionnaire based on previously published surveys (Davey et al. 2005; Michie et al. 1997; Nisselle et al. 2008; Vadaparampil et al. 2011) was provided to eligible patients (Supplemental Materials). Prior to the distribution of questionnaires to the patients, the office staff indicated on the reverse side of the form the following: i) whether the patient was to be seen by a geneticist (physician) or a genetic counselor, ii) discipline within the Program (e.g. HBOC) and iii) location of the appointment (specific clinic site or TH). The remainder of the questionnaire was completed by the patient. Patients were provided with the questionnaire at the end of their genetics appointment by the geneticist/genetic counselor who saw the patient. It was explained that the procedure was voluntary and anonymous. A stamped, self-addressed envelope was also provided. No honorarium was offered. There were four basic sections to the survey. The first section consisted primarily of demographic data and discipline seen within genetics. The subsequent two sections related to the quality of the clinical encounter – i) the quality of
Evaluation of a Genetics Service
counseling based on educational/informational aspects (e.g. whether testing was explained fully, testing options, the meaning of normal/abnormal testing) and ii) competency, respect and directiveness of counseling. The final component dealt with clinical environment/setting. Patients also evaluated whether or not the appointment was a positive experience and worthy of their time. Patients also had the opportunity to make comments related to their clinical experience. Data Analysis Descriptive statistics were utilized to evaluate demographics and clinical satisfaction. Totals in certain categories differ due to missing data. Statistical analysis was performed in two components: i) unstratified data and ii) stratified data – a) provider (counselor and medical geneticist) and b) discipline/reason for referral within the Program. SPSS11.5 was utilized for Chi square analysis. A P value of
