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Patient Engagement And Coaching After Total Joint Replacement (TJR)

Total Joint Replacement (TJR) surgery is one of the most common surgeries during old age. Surgery is the beginning of long-term care for a patient undergoing a joint replacement. Most of the time patients lack postoperative-care information and end up causing irreplaceable harm to themselves.

Successful healing and prevention of complications depend on the active patient and family participation. It requires a comprehensive learning plan covering pain management, physical therapy, anticoagulation, and signs and symptoms of postoperative complications.

With the increasing day care surgeries and reduced length of stay at the hospital, self-care is inevitable and highly recommended for a better operative outcome (Loft, McWilliam, & Ward-Griffin, 2003; Prouty et al., 2006). Proactive reaching out to the patient in the comfort of their home is more effective than waiting for patients to call.

Research indicates that patients do not realize the importance of discharge education until they are in the home environment (Bostrom, Caldwell, McGuire, & Everson, 1996). Hence, there is a need for additional reinforcement of teaching after discharge (Davison, Moore, MacMillan, Bisaillon, & Wiens, 2004).

Discharge telephone calls provide an opportunity for effective symptom management (Czarnecki, Garwood, & Weisman, 2007) and have been used to evaluate and proactively address complications (Dutkiewicz, 2010). Studies around the world illustrate the benefits of Nurse-led follow-up call and pain coaching in patients with Total joint replacement surgeries.

A 2014 publication in Evidence-Based Practice Project Reports by Jones, Laurie J., “The Effect of Telephone Follow-Up on Pain Experienced by Patients After Knee Replacement Surgery” (2014). Evidence-Based Practice Project Reports signifies the importance of structured telephonic support by nurses for patients who had gone knee replacement surgery.

Mazaleski(2011) states that patients and families who attended preoperative educational classes feel anxious about the surgical procedure and don’t think ahead to the postoperative recovery period.

Providing contact information to the patient for questions and concerns does not always work. Barksdale and Backer (1998) found that most patients did not take the initiative to contact their healthcare providers with questions or for clarification regarding their plan of care. A study by Czarnecki et al. (2007) also demonstrated the reluctance of patients to contact a healthcare provider once they were home. More importantly, findings suggest that patients with the greatest need for support are least likely to initiate contact with their healthcare provider. Costa et al. (2011) reported that patients felt medication questions, for example, could be left unanswered until the doctor’s appointment weeks later.

Postoperative care gap is identified after the patient reach home and is faced with the realities of adjusting to the home environment. Many a time, patients don’t think of questions they want to ask until discharged. The patients usually lack knowledge and would rarely reach out for help. The problems of postoperative patients are multidimensional and require complete attention. Many studies conclude that post-discharge phone calls provide education at a time when it is most meaningful for patients and their families. Combining minimally invasive techniques with a holistic postoperative program will yield more rapid recovery.

References:

  1. Chen M, Li P, Lin F. Influence of structured telephone follow-up on patient compliance with rehabilitation after total knee arthroplasty. Patient preference and adherence. 2016;10:257-264. doi:10.2147/PPA.S102156.

  2. Unfulfilled Expectations After Total Hip and Knee Arthroplasty Surgery: There Is a Need for Better Preoperative Patient Information and Education. Tilbury C, Haanstra TM, Leichtenberg CS, Verdegaal SH, Ostelo RW, de Vet HC, Nelissen RG, Vliet Vlieland TP. J Arthroplasty. 2016 Oct;31(10):2139-45. doi: 10.1016/j.arth.2016.02.061. Epub 2016 Mar 17.

  3. The International Knee Documentation Committee Subjective Knee Evaluation Form: normative data. Am J Sports Med. 2006 Jan;34(1):128-35. Epub 2005 Oct 11.

Patient Engagement After Radical Prostatectomy

Prostate cancer (PCa) is the second most common cause of cancer and sixth leading cause of cancer mortality among men worldwide. The worldwide prostate cancer burden is expected to grow to 1.7 million new cases and 499 000 deaths by 2030 (Ferlay et al., 2010). Previous it was assumed that prevalence of prostate cancer in India is scanty as compared to the developed nations but with changing lifestyles, easy access to the medical facility and urban migration, high cases of prostate cancer are being reported nowadays.

Prostate cancer is one of the top ten leading cancers in India. Prostate cancer is the second most common cancer among males in large Indian cities like Delhi, Kolkata, Pune and third common cancer in cities like Bangalore and Mumbai. According to cancer projection data, the number of prostate cancer in India will double by 2020.(Epidemiology of prostate cancer in India, Aug 2014)

One of the standard therapy for prostate cancer is Radical prostatectomy (RP), a surgical procedure for removing the prostate gland and surrounding tissue. The post-discharge period after radical prostatectomy is often full of anxiety for both patients and their families. They have to deal with physical and emotional challenges associated with surgery.

Lack of knowledge about predicted recovery and non-coordinated self-care significantly reduces postoperative recovery.

The importance of nursing support in the later months after radical prostatectomy has been well described (Gregoire, Kalogeropoulos, & Corcos, 1997; Montie, 1994; Sharp, Blum, & Aviv, 1993). Healthcare professionals recognize the importance of providing self-care information prior to discharge from the hospital, but it is often not incorporated into practice or are ineffective. Empowering surgical patients with the necessary information to make informed decisions and to cope after surgery may be hindered by many factors such as timing of information (Valanis & Rumpler, 1985), inability to retain information (Krupat, 1986), unfamiliar medical terminology (Estey, Kemp, Allison, & Lamb, 1993), and a perceived or real lack of support (Taylor, Bandura, Ewart, Miller, & DeBusk, 1985). Out of which lack of knowledge is considered to be the most important hindrance to self-care.

Men who had undergone a prostatectomy felt they had not been properly informed even though the health care professionals believed they had provided comprehensive information both pre and postoperatively. Anxiety related to hospitalization, fatigue, and postoperative pain often makes it difficult for the patient to absorb all self-care information they are provided while in hospital. Gray, Fitch, Phillips, Labrecque, and Klotz (1999) identified notable differences between what health care professionals expected patients level of knowledge to be prior to having a prostatectomy, and what the patient said he understood when interviewed after surgery. Similar inconsistency was noted by Moore and Estey (1999).

Phillips et al. (2000) also found that even after 8 to 10 weeks of prostatectomy, patients identified level of activity as the most important indicator of satisfactory recovery. These findings demonstrate the need for continuous engagement to ensure that patient understands variation in the length of recovery time and have a realistic attitude toward activity levels. Patients seek constant support and guidance post surgery. On-call postoperative nursing interventions promote physical recovery, emotional well-being, and satisfaction in self-management after discharge (Langwade, 2000). Follow-up telephone calls after discharge, psychological consultation, and engagement with support groups are recognized valuable for rapid recovery.

“According to Gallup survey, over the first year of surgery, follow-up telephone calls made to each patient the morning after discharge to answer questions and to remind patients to call for follow-up visits with their physicians or specialists resulted in 100% attendance at follow-up appointments and an increase of 11% in patient satisfaction.

Partners of prostatectomy patients also experience emotional difficulties (Oberst & Scott, 1988), but they also provide positive social support (Carlson, Ottenbreit, St. Pierre, & Bultz, 2001; Harrison, Maguire, & Pitceathly, 1995; Phillips et al., 2000) and want to be involved in all aspects of their partner’s care (Butler, Downe-Wamboldt, Marsh, Bell, & Jarvi, 2000). Post-operative education and engagement should be designed to provide collaborative and holistic support to not only the patients but their families too.

References:

  1. Epidemiology of prostate cancer in India, Shalu Jain, Sunita Saxena and Anup Kumar, Meta Gene. 2014 Dec; 2: 596–605. Published online 2014 Aug 29. doi: 10.1016/j.mgene.2014.07.007, PMCID: PMC4287887

  2. The role of the clinical nurse specialist in caring for patients with prostate cancer: a narrative review. Authors de Moraes Lopes M, Higa R , dop: 18 July 2014 , Volume 2014:4 pages 77-89 DOI: https://doi.org/10.2147/NRR.S36752

  3. Telephone follow-up of patients after radical prostatectomy: a systematic review. Rev. Latino-Am. Enfermagem 2014 Mar.-Apr.;22(2):337-45 DOI: 10.1590/0104-1169.3314.2421 www.eerp.usp.br/rlae

Patient Engagement in Epilepsy

Epilepsy is the second most common and frequently encountered neurological condition that imposes a heavy burden on individuals, families, and also the health care system. It is a chronic medical problem requiring long-term treatment. Of the 70 million persons with epilepsy (PWE) worldwide, nearly 12 million PWE are expected to reside in India; which contributes to nearly one-sixth of the global burden.

The risk of premature death in people with epilepsy is up to 3 times higher than the general population. According to WHO Epilepsy fact sheet 2017, a great proportion of these deaths are preventable by providing continuous care and psychological support.

Epilepsy can be treated easily and affordably with inexpensive daily medication that costs as little as US$ 5- 10 per year. After 2 to 5 years of successful treatment and being seizure free, drugs can be withdrawn in about 70% of children and 60% of adults without subsequent relapse. Unfortunately, due to lack of knowledge and support about the disease, around three-fourths of people with epilepsy may not receive the complete treatment they need. (knowledge-gap and treatment-gap). These gaps lead to nonadherence to treatment, which is among the highest in Epilepsy (30% – 50%). A study conducted in 1998 calculated that the cost per patient of epilepsy treatment in India was as high as 88.2% of the country’s per capita Gross National Product (GNP), and epilepsy-related costs, which included medical costs, travel and lost work time, exceeded $2.6 billion/year. (Thomas SV, Sarma PS, Alexander M, et al. Economic burden of epilepsy in India. Epilepsia 2001;42:1052–1060)

The prevalence of antiepileptic drug nonadherence among patients is significantly associated with variables like availability of health information, epilepsy-related stigma, absence of social support, AEDs side effects, duration of the treatment, and ways of getting AEDs (free of charge or with fee). Non-adherence to AEDs has been associated with reduced seizure control, lowered quality of life, decreased productivity, seizure-related job loss, and seizure-related motor vehicle accidents. Patient-oriented epilepsy treatment programs and clear communication strategies to promote self-management and patients’ understanding of epilepsy are essential to maximizing treatment and quality of life outcomes while also minimizing economic costs.(Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: Survey of patients with epilepsy and physicians. C.A. Hovinga et al. / Epilepsy & Behavior 13 (2008) 316–322). Giving brief psychoeducation about epilepsy, AEDs side effect and the importance of sticking with the recommended drug use can improve AEDs adherence.

Need for Advice and information on Epilepsy

People with epilepsy have a need for clear, accurate and appropriate information and advice. Surveys have reported that up to 90% of patients want more information and feel that they have got, little advice regarding the cause of epilepsy, effects, of drugs and the avoidance of potentially dangerous situations. Moreover, patient forgets and fail to understand instruction given during clinic visits. Therefore, post follow-up contact is required.

The quality of epileptic information and mode of delivery plays a critical role. Many patients prefer talking to an epilepsy nurse or someone with whom they feel connected and at ease. The information should be provided at different times for the duration of treatment to ensure understanding.

Recent studies have suggested that patients with epilepsy feel more connected to healthcare providers who are approachable, communicative in delivering adequate information on their condition. Information should be adjusted to their understanding, according to their socio-cultural contexts.

Research in developed countries has concluded that reducing the information deficit would significantly reduce the morbidity associated with epilepsy.

Epilepsy is not just a seizure disorder but one that is known to be associated with major psychosocial challenges (Jacoby, Baker, Steen, Potts, & Chadwick, 1996). Caregivers and patients report high satisfaction with having someone on the care team that is more accessible and who has the capacity to advocate on their behalf (Scottish Intercollegiate Guidelines Network [SIGN], 2003).

Once the diagnosis of epilepsy is made, patient and their families have numerous questions concerning the diagnosis and how it affects their life. Failure to answers these questions demotivates the patients and they feel neglected. This negative attitude will have an adverse effect on their health. It is the responsibility of healthcare provider to ensure that patients are provided with full support during the course of treatment.

Group support is an important resource for anyone living with a chronic illness. Many countries and NGOs have started local support groups for epilepsy, consisting of patients and caregivers. These support groups provide an opportunity to meet, share resources, speak with medical professionals and unite.

However, less developed countries, with 80% of PWE population, have been slow in building proper support and engagement mechanisms for epilepsy.

References:

  1. Health and economic benefits of public financing of epilepsy treatment in India: An agent-based simulation model. Megiddo, I., Colson, A., Chisholm, D., Dua, T., Nandi, A. and Laxminarayan, R. (2016) Epilepsia, 57: 464–474. doi:10.1111/epi.13294

  2. Antiepileptic Drug Nonadherence and Its Predictors among People with Epilepsy. Getnet A, Woldeyohannes SM, Bekana L, et al. Behavioural Neurology. 2016;2016:3189108. doi:10.1155/2016/3189108.

  3. Epilepsy self-management: a comparison of self-efficacy and outcome expectancy for medication adherence and lifestyle behaviors among people with epilepsy. Kobau, Rosemarie et al. Epilepsy & Behavior, Volume 4, Issue 3, 217 – 225

  4. An evaluation of self-management behaviors and medication adherence in patients with epilepsy. McAuley, James W. et al. Epilepsy & Behavior, Volume 13, Issue 4, 637 – 641

  5. Self-reported medication adherence and treatment satisfaction in patients with epilepsy.Sweileh, Waleed M. et al. Epilepsy & Behavior, Volume 21, Issue 3, 301 – 305

  6. Epilepsy: Indian perspective. Santhosh Nandanavana Subbareddy, Sinha Sanjib, Satishchandra Parthasarathy, Year: 2014 | Volume: 17 | Issue Number: 5 | Page: 3-11

  7. Patient-Centered Outcomes in Older Adults with Epilepsy. Miller WR. Seizure. 2014;23(8):592-597. doi:10.1016/j.seizure.2014.04.010.

Patient Engagement in Muscular Dystrophy:

Muscular Dystrophies (MD) are a group of rare genetic muscle disorders characterized by progressive skeletal muscle weakness over time. According to most estimates, the prevalence of muscular dystrophy in India is about 350,000- 500,000, though no reliable studies/registry exist in this field. With newer drug and organized care patient with MD can now live longer and enjoy better quality of life

Major goals are early diagnosis and establishment of a rehabilitation plan, maintenance of ADL and ambulation as long as possible, the anticipation of complications, and the development of a program of prevention and supportive counseling to patient and family.

Muscular dystrophy has no cure, but acting early may help an individual with muscular dystrophy in getting the services and treatments needed to lead a healthy life. Muscular Dystrophy can affect a person physically and emotionally. Proper monitoring, patient engagement, and support groups help them understand and come to terms with their condition. As the symptoms of Muscular dystrophy changes with time and involve various organs, experts have stressed that best management of MD requires coordinated and multidisciplinary effort. It is important to monitor the symptoms on a regular basis and to get help, care and support as early as possible. Clinical management requires the use of a well-designed scale to measure patients’ functional status. Because of the severity of disease, patient and their family should be actively engaged for maximum benefit.

A comprehensive rehabilitation plan for patients with MD includes periodic monitoring for progression of the disease, regular support, and counseling, screening for complications, organize support groups, etc to ensure the best quality of life and health outcomes.

References:

  1. Yen-Mou Lu and Yi-Jing Lue (2012). Strength and Functional Measurement for Patients with Muscular Dystrophy, Muscular Dystrophy, Dr. Madhuri Hegde (Ed.), ISBN: 978-953-51-0603-6, InTech

  2. Yi-Jing LueChwen-Yng SuRei-Cheng YangWei-Lieh SuYen-Mou LuRong-Fong LinShun-Sheng Chen. Development and validation of a muscular dystrophy-specific functional rating scale. Clinical Rehabilitation. Vol 20, Issue 9, pp. 804 – 817

  3. Wang RT, Nelson SF. What Can DuchenneConnect Teach Us About Treating Duchenne Muscular Dystrophy? Current opinion in neurology. 2015;28(5):535-541. doi:10.1097/WCO.0000000000000245.

  4. Scully MA, Cwik VA, Marshall BC, et al. Can outcomes in Duchenne muscular dystrophy be improved by public reporting of data? Neurology. 2013;80(6):583-589. doi:10.1212/WNL.0b013e318282334e.

  5. Kevin M.Flanigan. Duchenne and Becker Muscular Dystrophies. Neurologic Clinics. Volume 32, Issue 3, August 2014, Pages 671-688

Patient engagement in Multiple Sclerosis

Multiple Sclerosis is a chronic demyelinating illness of the Central Nervous System requiring multidisciplinary team approach for successful management. Considered a rare disease in India in the past, it is being increasingly diagnosed nowadays mainly due to increase in the number of practicing neurologists and easy and affordable availability of Magnetic Resonance Imaging (MRI). The current World Health Organization (WHO) Multiple Sclerosis International Federation (MSIF) “Atlas of MS”, 2013 estimates a prevalence rate of 5-20 per 100,000 in India, which seems to be an underestimate.

Advances in medicine, technology and healthcare services offer promises of longevity and improved quality of life (QoL) in M.S. The prognosis is largely centered around quality of life and potential for disability. There is increased reliance on a patient’s skills and motivation to optimize all available resources. To improve the outcomes for the patient, society, and healthcare systems, patient engagement in multiple sclerosis is vital.

Patients have to face decisions relating to treatment, interventions and services availability, and Quality of Life on a long-term basis. Collaboration with the patients to help them monitor and manage their health has shown enormous benefits in M.S. As per studies, patients report symptoms early and more frequently than clinicians and the reports are highly concordant with overall health status than clinician’s reports (Basch, 2010). A number of studies have reiterated the importance of relying on patient-reported outcomes for a holistic multidisciplinary management in Multiple Sclerosis.

Patient-reported outcomes (PROs) include information provided by the patient reflecting their functioning health and wellbeing from their perspective and impact of the disease and medical intervention on QoL. PROs introduce a more holistic approach to disease management by incorporating outcomes affecting the patient across many aspects of QoL.

The MS in the 21st Century Steering Group devised a set of themes that require action with regard to patient engagement in MS, namely:

  1. Setting and facilitating engagement by education and confidence-building
  2. Increasing the importance placed on QoL and patient concerns through patient-reported outcomes (PROs)
  3. Providing credible sources of accurate information
  4. Encouraging treatment adherence through engagement
  5. Empowering through a sense of responsibility.

References:

  1. Rieckmann P, Boyko A, Centonze D, et al. Future MS care: a consensus statement of the MS in the 21st Century Steering Group. Journal of Neurology. 2013;260(2):462-469.

  2. Rieckmann P, Boyko A, Centonze D, et al. Achieving patient engagement in multiple sclerosis: A perspective from multiple sclerosis in the 21st Century Steering Group. Multiple Sclerosis and Related Disorders (2015) 4, 202–218

  3. Rolak LA. Multiple Sclerosis: It’s Not The Disease You Thought It Was. Clinical Medicine and Research. 2003;1(1):57-60 Singhal BS, Advani H. Multiple sclerosis in India: An overview. Annals of Indian Academy of Neurology. 2015;18(Suppl 1): S2-S5. doi:10.4103/0972-2327.164812.

  4. Bhatia R, Bali P, Chowdhary R. Epidemiology and genetic aspects of multiple sclerosis in India. Ann Indian Acad Neurol 2015;18, Suppl S1:6-10

  5. Sharrack, Basil et al.: Clinical scales for multiple sclerosis, Journal of the Neurological Sciences, Volume 135, Issue 1, 1 – 9

  6. Ziemssen T, Kern R, Thomas K. Multiple sclerosis: clinical profiling and data collection as a prerequisite for personalized medicine approach. BMC Neurology. 2016;16:124. doi:10.1186/s12883-016-0639-7.

  7. J. C. Hobart, A. Riazi, D. L. Lamping, R. Fitzpatrick and A. J. Thompson: Measuring the impact of MS on walking ability -The 12-Item MS Walking Scale (MSWS-12) Neurology. 2003 Jan 14;60(1):31-6.