Quality in Primary Care Open Access

Assessment of Value-Based Healthcare Delivery in Cardiac Care for Children of Amish Families

Devyani Chowdhury^1,2*, Mishaal Ather¹, Corey Snyder¹, Mallika Kodavatiganti³, Fred Van Eenennaam⁴ and Karla Brigatti^{5 1}Department of Cardiology, Lancaster University, USA
²Department of Cardiology, Wilmington University, USA
³Department of Cardiology, Thomas Jefferson University, USA
⁴Department of Hospital’s Strategy and Innovation, Amsterdam University Medical Centres, Netherlands
⁵Department of Pediatrics and Audiology, Strasburg Universit, USA
^*Correspondence: Devyani Chowdhury, Department of Cardiology, Lancaster University, USA, Email:

Received: 29-Mar-2023, Manuscript No. IPQPC-23-16368; Editor assigned: 31-Mar-2023, Pre QC No. IPQPC-23-16368 (PQ); Reviewed: 14-Apr-2023, QC No. IPQPC-23-16368; Revised: 19-Apr-2023, Manuscript No. IPQPC-23-16368 (R); Published: 26-Apr-2023, DOI: 10.36648/1479-1064.23.31.14

List of Abbreviations

(VBH) Value-based Health Care; (PICS) Pediatric Integrated Care Survey; (FFS) Fee For Service; (RACHS) Risk Adjustment for Congenital Heart Surgery; (CAHPS) Consumer Assessment of Healthcare Providers and Systems

Introduction

Value-Based Healthcare (VBHC) is an emerging concept that takes into account the perspectives of individuals receiving care. This model has its foundations and is defined by Michael Porter as the value of the care by means of the resources used and the anticipated outcome. The way the value of care can be determined is through a ratio between the outcomes in health for patients and the cost incurred by the health system [1]. Therefore, it is a health system that is patient and outcome driven. Comparatively, traditional paradigms of healthcare are not focused on the value of care such as the Fee for Service (FFS) reimbursement model. In FFS, patients are required to pay for every use of healthcare facilities typically with high out-of-pocket expenses. In FFS models, services are paid for by the patient through an insurer, commission, or administrator. An FFS system pays for the health services for the patient without acknowledging the results of outcomes, patient satisfaction, and is expensive.

As a result, adding value to healthcare becomes very important. This can be achieved by assessing outcomes through registries, establishing benchmarks and implementing quality initiatives that lead to efficient, cost effective and coordinated care [2]. This is advantageous to both the patients and the healthcare providers. To patients, VBHC allows them to experience quality healthcare, drive their care based on their preferences, and allow them to receive integrated care. To healthcare providers, it serves to contain costs and help ease financial burdens. With an increase in healthcare requirements and the advancement of technology, healthcare costs are at a rise. VBHC will allow healthcare providers to focus on health aspects directed by patients needs and help them direct investments towards those goals.

VBHC requires critical assessments of health outcomes, which helps shape and improve healthcare systems. These are described in three tiers by Porter, which become the basis of VBHC. Tier 1 accounts for health status, such as mortality and functionality, tier 2 accounts for the type of care and recovery and tier 3 accounts for sustainability of health [3]. All these outcomes should be considered by healthcare providers to cater to patients in a sustainable and integrated way, in which integrated care encompasses team-based care, connection to life, community health, and future planning [4].

The Amish community puts great emphasis on family, including extended family. Due to their strict adherence to cultural values, Amish children attend Amish operated schools and get formal education until the eighth grade. The children have a basic curriculum that involves writing and arithmetics. They are involved in Amish-owned family businesses and farms and do not use technology at homes, schools, or workplaces [5]. The Amish believe in shared responsibility of the community to help fellow members. They consider insurance to be detrimental to this belief. Therefore, they do not take aid from the government or insurance companies and are also exempted from the Affordable Act of 2010 [6]. As a result, the Amish are uninsured for different reasons than non-Amish patients are uninsured. In the Amish, the primary reason for being uninsured is strictly due to religion and culture. This implies that the Amish will pay for all of their health services out-of-pocket. However, if the expenses are not affordable, they will seek the community’s help which would be provided through alms or community collections.

Methods

The study uses the Pediatric Integrated Care Survey (PICS), a validated survey developed by Ziniel et al. [7] which was designed to evaluate integration of children’s healthcare through assessing the child’s families’ experiences. This survey included 19 experience items that assess five aspects of healthcare: Access, communication, family impact, goal creation and team functioning. The survey was mailed to 160 participants with a self-stamped return envelope. The patients’ families were contacted thrice by phone; first was to inform them that they will be receiving a survey in the mail, second was a week later to confirm if they have received the survey, and a third phone call a week later to confirm that the survey had been mailed back to the clinic.

The participants of this study were the parents/guardians of children who had undergone at least one cardiac surgery, irrespective of the complexity and place of surgery. The children were being followed at Cardiology Care for Children; an outpatient clinic located in Lancaster, Pennsylvania. The study population had a significant interaction with the healthcare system as their child had undergone cardiac surgery. The clinic caters to patients that come from various ethnic backgrounds of which 15% belong to the Amish; and present with a wide range of cardiac pathologies which may or may not be associated with genetic syndromes. It is in close association with academic hospitals in Pennsylvania and Delaware where patients are referred for cardiac surgeries that range from Risk adjustment for congenital heart surgery (RACHS) 1-6, in complexities. IRB approval was obtained for the study. Through a series of questions, 19 items adapted from the PICS survey assessed communication, family impact, goal creation and team functioning, demonstrated. The options given to gauge the favorability of their responses for the 19 items were as follows; never, rarely, sometimes, usually, almost always, and always. The bottom two boxes suggest ‘never’ and ‘rarely’ and the top two boxes suggest ‘almost always’ and ‘always.’ However, short-term goals and access to medical records were answered in a yes or no manner, with yes being a favorable response. The favorability of responses and the composite scores were further compared between insured and uninsured. The questionnaire assessed patient characteristics, healthcare needs of the child, utilization of medical services, medications, equipment, and healthcare perceptions. These were done using frequencies and percentages. This was compared between insured and self-pay. To maintain patient confidentiality and anonymity, the details and the location of cardiac surgery were not inquired in the questionnaire. The responses to the survey were taken as consent from the patient/ family. The IRB felt strongly that a signature not be obtained as it could reveal the identity of the patient.

Composite score calculation was done, adapted from Consumer Assessment of Healthcare providers and Systems (CAHPS) Surveys, which indicates the percentage of participants who gave a favorable response to the questions asked. The results of the calculations were compared between the insured and selfpay. An independent sample t-test was conducted to assess if differences exist in between the care received by insured and self-pay, with a 95% confidence interval (p<0.05). In addition to cumulative scores, the 5 components of the survey were compared between insured and self-pay.

Results

160 parents and guardians of children who had undergone cardiac surgery were identified and the survey was mailed to them. Of those sent, 57 surveys were filled and returned back, making the response rate 36%. There are a multitude of factors that impact survey response rate and are not exclusive to one reason. The response rate is likely due to lack of incentive, lack of desire; the survey was forgotten, poor survey timing, etc.

Table 1 describes the patients’ baseline characteristics. Of the respondents 46% of the patients were male, 23% were between ages 1 to 3 years, and 53% were between 4 to 12 years of age. 37 (67%) were insured and 17 (30%) were self-pay; 11 of whom were Amish (58%). The demographics of the two groups were similar. Overall, 85% of the participants had 2-5 healthcare providers. Majority of the patients (70%) had no ER visits, and 70% had no additional hospital admissions.

Table 1: Patient characteristics.

Table 2 describes the differences in perception of health and healthcare utilization between insured and self-pay. The selfpay reported less medical comorbidity than those who were insured, with none reporting developmental and behavioral problems. Healthcare utilization was lower in the self-pay. 27% of the self-pay had an education plan, compared to 47% of the insured. None of the self-pay utilized the school aid, possibly because they were unaware of it or were not part of the traditional public school system. None of the self-pay had hearing care. 5% of the self-pay had mental health services compared to 26% of insured. 5% of the self-pay utilized vision care compared to 37% in the insured.

There was significant discrepancy in having a primary care doctor and medical surgical specialty as providers for the families. 95% of the insured had a pediatrician or a family doctor, compared to 68% of the self-pay. 71% of the insured medical surgical specialties, compared to 31% of the self-pay. None of the uninsured had school aid, a social worker, or behavioral health services. No significant differences were noted in the therapies employed. A significant number of the self-pay felt that short and long-term goals were not communicated to them. In comparison, 71% of the insured group felt that both types of goals were explicitly described.

PICS Results

The responses of participants in the PICS questionnaires in each of the categories are shown in Table 3 and the most favorable responses by insured and self-pay are analyzed in Table 4.

Table 3: PICS results (Overall).

Table 4: Comparison of the respondents in the most favourable responses between Insured and Self pay.

Access: Majority of the patients said that they had adequate access to healthcare with no delays, with 92.9% agreeing for no lack of sufficient services and 98.2% agreeing for no lack of information. The results were similar when the insured and the self-pay were analyzed separately.

Communication: Communication was perceived to be better by the self-pay. 100% of the self-pay reported that they received explanations in an understandable manner and that they were listened to carefully, while in the insured this was seen 87.5% and 82.5% respectively. Both the groups were equally comfortable voicing their concerns. 87.5% of the insured and 94.1% of the self-pay were treated as full partners in care.

Family impact: 30.8% of the insured and 41.2% of the self-pay reported that their entire family was taken into account. Stress was discussed more with the insured whereas difficulty was discussed more with the self-pay, although both reported them to be ranging approximately between 18% and 25%. Different communications and peer connections were offered to both groups equally. Only 16% of the insured participants and none of the self-pay were asked about the need for other services, which may account for the underutilization of services by self-pay.

Creation of short and long-term care goals: Short-term goals for patients and their families include those that affect patients’ health and day-to-day assessments. Examples of short-term goals are follow-up care, medications, dietary, and exercise changes. Long-term goals pertain to quality of life and career. Overall, the short and the long-term goals were reported by 60% and 69% of the participants. Significant differences were seen when the insured were compared with the self-pay. Shortterm goals were reported by 69.2% of insured and 43.7% selfpay. Long-term goals were reported by 69.2% of insured and 46.7% of self-pay.

Team functioning: Of the responses, the favorable aspects that were covered by the healthcare providers were the consideration of the ‘big picture’ (91.2%), follow-up through responsibilities (87.3%), and awareness of tests and evaluations (72.5%). While these differences were not significant between the insured and self-pay, there were differences seen in other components. None of the self-pay had help with school issues, were offered communication with the in-school team, or were aware of health events or educational services. Composite score comparisons of favorable responses in Table 5 showed a significant difference in communication and team functioning with more favorable responses by the self-pay. Care goal creation was seen more in the insured group. No significant differences were seen in access to care or family impact.

Table 5: Composite score, indicating the favorability of responses comparison between insured and uninsured.

Discussion

Patient centeredness is a core principle for VBHC, which makes understanding of the perceptions of patients, their families, and communities very important. This requires patient engagement at individual, organizational, and system levels. At individual levels, the patients and their families should be given the liberty to effectively communicate and be involved in shared-decision making. At organizational levels, patients and families should be provided with platforms where they can, as members of patient/ parent led organizations or forums, participate in policy level changes and guide towards improvement of the healthcare system [8].

Patient and family-centered care is a concept that strives to engage patients and their families to determine the type of care they receive, so as to improve patient directed outcomes and satisfaction [4,8]. This is being adopted widely by hospitals along with the development of tools to assess the needs of the patients and tailor healthcare facilities accordingly [7,9,10]. Various communities such as the Amish have a distinct cultural and religious background that profoundly influence their way of living, perception of health, and utility of healthcare services [11]. These unique beliefs and practices make it important for healthcare providers to understand the values certain groups have towards health and tailor their care accordingly.

Evaluation for access to healthcare may be a limitation of the study because the participants are from one clinic and are a small patient population which does not represent all patients. The unique cultural practices of the Amish leads to their altered perceptions of health and wellbeing, which is reflected in the differences seen in the survey. The differences may be due to healthcare disparities or presumptions made by clinicians. Enrichment of certain alleles by virtue of a small founding population leads to an increased number of genetic diseases [12]. These diseases confer children belonging to the Amish community to have a myriad of neurological, developmental and behavioral problems. Despite this, the self-pay, majority of which consisted of the Amish, reported these medical comorbidities far less than the insured participants.

While the self-pay reported that all received clear explanations and had all of the questions answered, this may be due to receiving different explanations than the insured group. Despite having better perceived communication with the health care providers, they reported a lower utilization of healthcare facilities, including health care providers, school health workers, social workers, or those offering behavioral assistance. An integrated continued care is essential for better health outcomes and improved quality of life.

Therefore, it is imperative for clinicians to identify factors that prevent these patients from availing these services. This also points to biases within the health care system that may prevent the uninsured from taking advantage of these services.

One method for high value care and higher service utilization is to clearly define short and long-term goals with the patients and their families. Another factor that plays a crucial role is cost. Because health service utilization is associated with high costs, it becomes unaffordable for those without insurance to avail these services. Clinicians must try to find community partners that can deliver similar care at an affordable cost.

Communication is an integral part in the doctor-patient relationship. Studies have shown that adequate communication is associated with better hospital functionality, leads to increased patient satisfaction, and improved patient outcomes [13,14]. It allows patients to fully understand the care they were given and adhere to the instructions provided to them [15]. Effective communication also leads to decreased readmissions [16]. In our study, the majority of the patients had a favorable response regarding communication. The results showed that 70% of the patients never had an ER visit as seen in Table 1. This could be due to the adequate instructions given during hospital visits which allowed them to appropriately manage their children. Another factor for low ER visits could be they had access to medical personnel after hospital hours who could direct their care. While communication between healthcare professionals and the patients were effective in this aspect, this is not the case in other areas.

Family centeredness works on various principles and aims to build a strong partnership between the medical providers and families working towards the best interest of the patient [17]. This allows the healthcare personnel to recognize that family is a constant in the patient’s care, gauge the cultural norms of the families, and engage families to make their own decisions while providing support [18,19]. The family impact of healthcare was assessed in this study and was found to be unsatisfactory in both groups, in self-pay more than insured. These results suggest further efforts to ensure that families are held equal stakeholders in the decision-making of the patient’s care. The impact of a child with medical needs on the family should be included as an important part of care delivery. It is important to reflect on why none of the self-pay were asked of the need for other facilities. Was it due to the patient's preferences or perhaps were neglected owing to the assumption that the Amish would prefer it that way.

The discussions regarding school work, school events, and communication with the school team was minimal for the self-pay. The Amish schools are unique and consist of Amish teachers who are careful not to allow external influences to affect the cultural practices of the community [17]. It is evident that the self-pay answered unfavorably for questions related to school. They were least helped with school issues, were not aware of the school events, and were offered least communication with the school team.

Conclusion

The study reflects that different populations have different needs that are important to them and this may be based on their cultural roots or perspectives. One would expect that the self-pay Amish community would have greater comorbidities due to founder gene effect but those reported by patients were fewer. The cost of care for the self-pay Amish community may also have also influenced the utilization of services. This study indicates patient-centered outcomes vary among patient populations. This is influenced by their socio-cultural beliefs and resources. Care must be customized to meet the needs of the patients and the community. The focus should be put on the specific needs of the unique community, with the patient's families participating as equal stakeholders in decision making.

Declarations

Ethics approval

Lancaster General Hospital IRB. Filling out the survey was taken as consent. No separate consent was obtained as data was de-identified and surveys could not be traced to individual patients/ families.

Acknowledgement

None.

Consent for Publication

Not applicable.

Conflict Of Interest

The authors declare that they have no conflict of interests.

Source of Funding

The authors declare that they have no funding for the research.

Authors Contribution

• Concept and design: DC, KS, KB, FVE

• Data collection: MK

• Data analysis: MA, KS

• Manuscript writing and revision: DC, CS, MK, MA, KS, KB

• All authors have approved the submitted version and are accountable for their contributions

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